Medical Professionals Directory

 
If you are a medical professional and wish to be listed here, please:

DISCLAIMER

The Ehlers-Danlos Society acknowledges how hard it is to find an EDS-friendly specialist across various disciplines globally, so to further our commitment to your access to management and care we have created this list that is populated by professionals submitting their information to our site.

It is important to note that The Ehlers-Danlos Society does not have any ownership or direct financial interest in any of the specific doctors or clinics listed on our EDS-friendly directory. There are no formal listing criteria, and The Ehlers-Danlos Society does not endorse, recommend, or certify any of these physicians.

If you think you have an emergency, call your doctor or emergency services immediately.

The Ehlers-Danlos Society does not guarantee or make any warranties, express or implied, as to the quality of medical advice or care given by any listed physician.

The information listed in the results are based solely upon the data entered by the medical professionals listed.

Jump to your country by using the links below.


Australia

Raj Anand, MBBS, FRACP (General Medicine/ Rheumatology) FFPMANZCA
Rheumatology, Pain Medicine,
Eastern Suburbs Pain Clinic
Specialist Medical Randwick
Barker Street
Suite 20, Level 7
Prince of Wales Private Hospital
NSW Randwick
0061 2 9650 4988
reception@pwphealth.com.au

Hospital affiliations:

  • Greenwich Pain Clinic

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Dr. Anand is a rheumatologist and Pain Physician who did his specialist training in New Zealand/ Australia. He is passionate about the journey people with persistent undertake on the journey to wellbeing. He works with a team including physiotherapist, psychologist, psychiatrists, and occupational physician whose expertise is in pain management. They interact with a team of other specialists and your own health providers.

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Australia

Jacintha Bell, OT
Occupational Therapy
Lifeworks Occupational Therapy
3/23 Wexford St
Subiaco, WA 6008
http://www.lifeworksot.com.au/
0451178880
reception@lifeworksot.com.au

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Lifeworks Occupational Therapy is an OT practice with a team of therapists experienced in working with people with all chronic conditions (including HSD), chronic pain, and mental health. We provide home visiting, clinic and telehealth consultations. We help people with chronic conditions to participate in the roles and activities of everyday life that are important to them. This may be in the areas of caring for yourself, managing your home, getting out in to the community, work or study (paid or unpaid), recreation/leisure and socialisation.

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Australia

Natalie Bennett-Bremner, BSc.Physio, Post.Grad.Dip.Sports Physio
Suite1B/151 Herdsman Pde
Wembley
Perth, WA 6014
Australia
http://www.kidzclinic.com.au/
+61 439 463 579
natalie@kidzclinic.com.au

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Kidz Clinic is a physiotherapy practice focussing on management of hypermobility disorders, EDS , gait abnormalities, coordination difficulties in children and adolescent age groups. Natalie has 25 years experience as a physiotherapist and in 2011 won the ABC TV New Inventors Award for medical innovation for Spiral Thigh Brace. This is a flexible bracing garment with a series of overlaid elasticised straps used for gait correction of pigeon toed gaits, inturned and knocked gaits specifically in the hypermobile/EDS population. Natalie has provided training workshops for physio’s and OTs in management of hypermobility disorders and has been an invited speaker at a number of Rheumatology Conferences and Podiatry Conferences.

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Australia

Sarah Bissett, B.Sc Podiatry
Podiatry
Peak Podiatry
211 Nicholson Road
Subiaco, WA 6008
http://www.peakpodiatry.com.au
08 93889999
admin@peakpodiatry.com.au

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Peak Podiatry is very proud to be widely recognized as Perth’s premier Sports Podiatry practice. We are a professional Sports Podiatry practice specializing in the treatment of soft tissue injuries, sporting injuries and mechanical conditions of the foot and lower limb through biomechanical and gait analysis, diagnosis, and management.

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Australia

Cliffton Chan, PhD, BPhysio, GDMusic, GCHigherEd
Physiotherapy
Potts Point Physio
105/24-30 Springfield Ave
Potts Point, NSW 2011
http://www.pottspointphysio.com.au/
(02) 9368 1824
contact@pottspointphysio.com.au

>> Show more information about this practice/clinic

We are focused on your health and well-being and will work with you to achieve your goals as efficiently as possible. We are dedicated to patient-centred, evidence-informed treatment that delivers the best outcome in the shortest possible time. You will receive dedicated one-on-one care throughout your entire treatment session as well as effective and evidence-based treatments.

We will happily liaise with all of your health care professionals and have an extensive network of GP’s, Sports Physicians, Podiatrists, Orthopaedic Surgeons, Neurologists and more. We also won’t hesitate to refer you on to the appropriate practitioner to help get you back on track where necessary.

We have highly qualified, experienced and patient-centred practitioners. Whether you want to optimise your sporting performance, treat a painful problem or need help with rehabilitation, one of our team can help you.

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Australia

Xiaoqi Chen, PhD
Physiotherapy
Physiotec Physiotherapy
23 Weller Road
Tarragindi
Brisbane, Queensland 4121
http://www.physiotec.com.au/
(07) 3342 4284
info@physiotec.com.au

This professional is a member of the International Consortium on EDS and Related Disorders

>> Show more information about this practice/clinic

We are a group of highly trained physiotherapists with a special interest in assisting hypermobile clients with the complex issues that often accompany these conditions. Generalised strengthening/exercise programmes are often not well tolerated by people with hypermobility. Our specific and individualised approach is tailored to improving quality of life.

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Australia

Katie Cleary, PT
Paediatric Physiotherapist
Ocean Kids Physio
1/2-8 Peninsula Blvd,
Seaford, VIC 3198
http://www.oceankidsphysio.com/
0497897162
contactus@oceanphysio.com.au

Hospital affiliations:

  • Monash Medical Centre
  • Royal Childrens Hospital
  • Peninsula Health – Frankston

This professional is a member of the International Consortium on EDS and Related Disorders

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Ocean Kids Physio is based on a philosophy of providing high quality, evidence based solutions to any movement problem. Our Paediatric Physiotherapists have extensive experience working with children and adults with a multitude of neurological and musculoskeletal conditions from birth and beyond.

Our director, Katie Cleary has extensive experience working with children and teenagers with Dysautonomia, following her work at Dance Medicine Australia in 2013/2014 treating clients with EDS and HEDS suffering with autonomic symptoms, chronic fatigue, musculoskeletal pain and functional issues.

Ocean Kids Physio treats babies, children and teens with all types of EDS / HEDS which affect their functional abilities. We use a range of modalities including vibration therapy strength training, clinic pilates, group therapy and hydrotherapy to improve pain, function and participation in children suffering from EDS or related connective tissue disorders. We are passionate about working with each individual in a unique way to support them to their goals in a fun and inclusive manner.

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Australia

Felicity Collins, MBBS
clinical genetics; paediatrics
Clinical genetics Unit, Royal Prince Alfred Hospital
Missenden Rd, Camperdown
Sydney, NSW 2050
+612-95155080
felicity.collins@health.nsw.gov.au

Hospital affiliations:

  • Royal Prince Alfred Hospital

This professional is a member of the International Consortium on EDS and Related Disorders

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Outpatient Clinical Genetics service for diagnostic evaluation of heritable genetic disorders including connective tissue disorders such as EDS, Marfan syndrome and LDS. Coordination of care for Marfan syndrome and LDS patients in conjunction with adult cardiology service. Not currently able to offer comprehensive management for hypermobility patients fulfilling criteria for HSD or hEDS.

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Australia

Michelle Crowther (née Scholes), B. Physio (Hons), Post Grad Cert Physio (Continence & Pelvic Floor Rehab)
Physiotherapy, Pelvic Floor Rehab
Be Your Best Physiotherapy
23 Mundaring Drive
Cranbourne, Victoria 3977
http://www.beyourbestphysio.com.au/
(03) 59962693
help@beyourbestphysio.com.au

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Private musculoskeletal clinic, with a focus on hypermobility disorders. Also offering pelvic floor rehabilitation for female and male clients, with incontinence, pelvic pain and other disorders.

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Australia

Roy Daniell, BScPhysio
Physiotherapy
Belconnen Physiotherapy Clinic
1/20 Purdue St
Belconnen, ACT 2617
https://www.physiotherapyclinic.net.au/
0262533266
Reception@belconnen.physio

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Predominantly a musculoskeletal therapy clinic, with specific interest in EDS including individual consultation. Provide onsite gym & hydrotherapy services. Provider to the NDIS.

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Australia

Amy Donato
Physiotherapy
Be Your Best Physiotherapy
23 Mundaring Drive
Cranbourne, Victoria 3977
http://www.beyourbestphysio.com.au/
03 5996 2693
help@beyourbestphysio.com.au

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Private musculoskeletal clinic with a focus on hypermobility disorders.

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Australia

Paolo Ghiselli, Bsc Hons
Paediatrics, sports, biomechanics
Peak Podiatry
211 Nicholson Road
Subiaco
Perth, WA 6008
http://www.peakpodiatry.com.au/
08 93889999
paolo@peakpodiatry.com.au

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Peak Podiatry prides itself as one of Perths premier sports, paediatric and rehabilitative podiatry clinics.
We are in the heart of Subiaco, making it accessible to anyone.
We are proud to be part of the medical team for many of the top sports teams in Western Australia.
We have a very close association with many physio groups who have a particular interest in paediatrics with particular reference to hypermobility.

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Australia

Nicole Haynes, Physiotherapist
Physiotherapy, podiatry, psychology, Occupational Therapist, Rheumatologist

Practice / Clinic 1:
Q Paediatrics/ Allsports/ Queensland Rheumatology Service
56 Coonan St
Indooroopilly, QLD 4068
http://www.allsportsphysio.com.au/

Practice / Clinic 2:
Queensland Rheumatology Service Arthur House
47 Arthur Tce
Red Hill, QLD 4059
http://queenslandrs.com.au/

07 33670085
info@qpaediatrics.com.au

>> Show more information about this practice/clinic

We are a paediatric specialty service which provides multidiciplinary services to rheumatological patients including Elers Danlos and Joint Hypermobility among others. We are passionate about patients achieving positive functional outcomes. We offer both individual and group consultations in a comfortable environment. We are extremely focused on deliviering a strong multidiciplinary management program to address the many areas these conditions can affect.

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Australia

Sharon Hennessey, BPhty (Hons)
Physiotherapy
PhysioTec
23 Weller Rd
Tarragindi
Brisbane, Queensland 4121
https://physiotec.com.au/services/hyper-mobility/
61 7 3342 4284
clinic@physiotec.com.au

>> Show more information about this practice/clinic

At PhysioTec we have a team of interested, dynamic, empathic physiotherapists who are knowledgeable about EDS/Hypermobility and are keen to assist you in your rehabilitation.

We can provide a detailed physical assessment to accurately assess you and guide you in achieving your goals through advice and education, hands on techniques as required and the use of graduated muscle strength training.

Initially we may use Real Time Ultrasound Scanning for visual feedback to retrain the deep muscles to provide support and guide your joint positioning and feeling.

Each individual’s rehabilitation program is then progressed and tailored to them but we do try to focus on functional gains with goals to improve sleep, decrease fatigue as well as improving strength and the feeling of stability.

We also provide small group classes for progression of strength and posture.

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Australia

Robyn Hickmott, PT
Musculoskeletal Physiotherapy, Pelvic Floor Rehabilitation, Exercise Therapy

Practice / Clinic 1
Lifecare Applecross Physiotherapy
8 Riseley St
Applecross
Perth, WA 6153
http://applecrossphysotherapy.com.au/
08 9364 2649

Practice / Clinic 2
Lifecare Southcare Physiotherapy
St John of God Medical Centre, 100 Murdoch Drive
Murdoch
Perth, WA 6150
http://southcarephysiotherapy.com.au/
08 9332 2132

applecross@lifecare.com.au

This individual is a member of the International Consortium on EDS

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Private musculoskeletal assessment and evidence-based management of what are often chronic and complex multi-system presentations. Robyn is patient centred and happy to liase with any other practitioner involved in your care, to help prioritise therapy. Restoring function & capacity, and helping achieve your goals is the focus. To this end both clinics have onsite supervised exercise facilities, and there is onsite hydrotherapy at the Murdoch clinic.

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Australia

Katie Hirneth
Physiotherapist
New Ability Health
3/40 Harrison St
Cardiff, NSW 2285
http://www.newabilityhealth.com.au/
0490054193
newabilityhealth@gmail.com

>> Show more information about this practice/clinic

We are a multi disciplinary clinic offering Clinical psychology and Physiotherapy services for the Newcastle/Lake Macquarie area. We are NDIS registered and also offer a mobile Physiotherapy service to those who require it.

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Australia

Camilla Holt, OT
Occupational Therapy
Perth Occupational Therapy
5/18 Kearns Crescent,
Ardross, WA 6153
https://perthot.wixsite.com/occupationaltherapy
+61 407 396 726
perthoccupationaltherapy@outlook.com

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Perth OT provides innovative occupational therapy services for children and adolescents, to improve functioning at school, at home, and in the community.

Working primarily the areas of handwriting, literacy and joint hypermobility, with a focus on building educational outcomes.

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Australia

Jeffery R Hooper,Bdsc
General Dentistry
DR JEFFERY R HOOPER DENTAL SURGEON
714 Anzac Highway
GLENELG, South Australia 5045
+61882945888
jefferyh@adelaide.on.net

This professional is a member of the International Consortium on EDS and Related Disorders

>> Show more information about this practice/clinic

I am a general dentist with special interest in head neck and facial pain and dysfunction. I have a long standing periodontal care interest, I was one of 4 dentists in 1974 who had the first dental hygenists in australia. before this periodontics was not a board specialty in Aust. I have a special interest in endodontics. I am an original member of the American Academy of Craniofacial Pain (began in Oaklahoma City 1985) I treat EDHS patients with occlusal splints for TMJoint/Cervical pain and dysfuntion.I also treat patients for sleep disorder/,TMJoint/Cervical pain with cutom made oral appliances not factory made ultra expensive non TMJoint supporting devices I also treat patients with TMJoint/cervical spine physical therapy techniques. that are specific to trigeminal neuclious and cranio/cervical autonomic plexis malfunction and the startle reflex malfunction. I have at present some 200+ EDHS patients with good symptom control

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Australia

Elizabeth Hornsby, BPhty (Physiotherapist)
Paediatrics
Kids Care Physiotherapy
Unit/6 149 Musgrave Rd
Red Hill, QLD 4059
http://www.kidscarephysiotherapy.com.au
(07) 3876 5364
admin@kidscarephysiotherapy.com.au

This professional is a member of the International Consortium on EDS and Related Disorders

>> Show more information about this practice/clinic

Kids Care Physiotherapy is a dedicated paediatric practice and has physiotherapists with extensive experience with the assessment and treatment of children from birth to 18 years. We treat children with orthopaedic, developmental, neurological and respiratory conditions including bladder and bowel dysfunction. One of our specialities is children with hypermobility (including EDS and HSD) and the director of Director of our clinic is currently studying her PhD in children with Hypermobility Spectrum Disorder and completing a clinical trial of the “Efficacy of a Pilates Intervention for school aged children with Hypermobility Spectrum Disorder on physical function and quality of life”.

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Australia

Hassan Karim, DPM, BSc (BiomedSc)
Sports Podiatry, Paediatrics and Biomechanics
Peak Podiatry
211 Nicholson Rd
Subiaco, Western Australia 6008
https://peakpodiatry.com.au/
(08) 9388 9999
admin@peakpodiatry.com.au

>> Show more information about this practice/clinic

Peak Podiatry is proud to be widely recognized as Perth’s Premier Sports and Family Podiatry Practice. We are a professional Perth Sports Podiatrist practice specializing in the treatment of bone, soft tissue injuries and sporting injuries of the foot and lower limb. We also have a strong focus on Paediatrics and hypermobility and are very aware of the wide scope of complications such issues.

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Australia

Louise Kerwin
Naturopath, kinesiologist, remedial massage therapies
Thyroid disorders, allergies/mast cell, pain management
Discover the Power of Touch Wellness Clinic
207 Frenchville Road
Frenchville
Rockhampton Central Queensland, QLD 4701
https://discoverthepoweroftouch.com/
61416284893
Discoverthepower@bigpond.com

This professional is a member of the International Consortium on EDS and Related Disorders

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I have been a massage therapist 19years, Kinesiologist 10 years and. Naturopath 2 years. I offer a wide range of treatments , programs and workshops, to assist you to better understanding of your health and wellness.

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Australia

Muhammad (Mo) Maarj, BPod MAPodA
Sports Podiatry, Orthotics, paediatrics
Narrabeen Sports Medicine Centre
Sydney Academy of Sport & Recreation
Wakehurst Parkway
Po box 571, Narrabeen
2101
https://www.hardingpodiatry.com.au

+61 2 9971 1188
m-maarj@hotmail.com

>> Show more information about this practice/clinic

At Narrabeen Sports Medicine Centre we have the pleasure of working with Sports physicians, Orthopaedic surgeons, Physiotherapists and Paediatric Rehabilitation Hypermobility Specialists to provide you with the best care possible.

We have seen a large number of hypermobile patients and involved in research in this field.

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Australia

Rosemary Marchese
Scoliosis Physiotherapy

Practice / Clinic 1
Schroth Scoliosis Physiotherapy Clinic
50
5 Ponderosa Parade
Warriewood, NSW 2102
0289140508
http://www.schrothscoliosisphysio.com.au/

Practice / Clinic 2
Max Sports Physiotherapy Clinic
50
5 Ponderosa Parade
Warriewood, NSW 2102
0289140508
http://www.maxsportsphysio.com.au/

info@maxsportsphysio.com.au

>> Show more information about this practice/clinic

We specialise in scoliosis. Scheurmann’s Disease and hyper mobile and/or low muscle tone. The clinic is run within Max Sports Physiotherapy Clinic as Schroth Scoliosis Physiotherapy Clinic. We have a holistic approach with physio, podiatry, dietetics and psychology. We liaise closely with all other specialists involved in your care.

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Australia

Bruce Mitchell, Mbps, facsp, gas for, facsm, MPainMed, Fipp
Sports and interventional pain physician
Metro Pain Group
Level 1. 271 Clayton Rd
Clayton, Vic 3168
http://www.metropain.com.au/
0419304132
Info@metropain.com.au

Hospital affiliations:

  • Monash House private hospital
  • Masada Hospital

>> Show more information about this practice/clinic

Metro pain group started in 1986.
It now has eight partners and 12 doctors, several psychologists, physiotherapists and physician assistants
We receive 4000 new referrals a year
All of our doctors deal with chronic pain
We all have various areas of interest
Pelvic pain, pelvic girdle pain and pelvic instability are a major interest
Neuromodulation is also a major interest
Our research department currently has 29 studies it is involved in

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Australia

Juliet Mollica, Bachelor of Podiatry
Paediatrics, Sports Podiatry
Peak Podiatry
211 Nicholson Road
Subiaco, WA 6008
http://www.peakpodiatry.com.au/
93889999

>> Show more information about this practice/clinic

We are a Sports and Family Podiatry practise with 6 Podiatrists. We see a range of conditions relating to the foot and lower limb.

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Australia

Carolyn O’Mahoney
Paediatric Physiotherapist
Therapy 4 Kids
1/35 Geils Court
DEAKIN, ACT 2600
http://www.therapy4kidscanberra.com.au/
(02)62828793
carolyn@therapy4kidscanberra.com.au

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Paediatric private practice located in Canberra with physiotherapy, occupational therapy and speech pathology services. NDIS-registered provider.

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Australia

Michelle O’Sullivan, OT
Occupational Therapy; Hypermobility; The Ehlers-Danlos Syndromes; HSD; LDS, Marfan Syndrome, Fatigue, Pain Management

Practice / Clinic 1
Michelle O’Sullivan Occupational Therapist
PO Box 272
Frenchs Forest, NSW 1640
https://www.michelleosullivan.com.au/

Practice / Clinic 2
Hypermobility Connect
PO Box 272
Frenchs Forest, NSW 1640
https://hypermobilityconnect.com

0422746968
michelle@michelleosullivan.com.au

>> Show more information about this practice/clinic

Michelle O’Sullivan Occupational Therapist: The uniqueness of my service lies in my extensive experience helping people to live as fully as possible with hypermobility & co-morbidities (e.g. POTS, Gastroparesis, Fatigue, Pain). I am able to offer you a big picture assessment of your needs, with individual recommendations on what steps to take next. I can recommend equipment/assistive devices to make day to day life easier. My experience working with adults with hypermobility conditions is unmatched by any Occupational Therapist in Australia.

I offer face to face appointments in Sydney and ONLINE appointments worldwide!

I also provide education, professional supervision & mentoring to OT’s.

Hypermobility Connect: An online platform for anyone living with a hypermobility condition to connect with others and gain hope & help while trying to manage their hypermobility & health.

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Australia

Janine Painter, OT
Paediatrics

Practice / Clinic 1
Janine Painter occupational therapy services
14 Central D
Miranda, NSW 2228
02 95242566

Practice / Clinic 2
Janine Painter occupational therapy services
836 Military Rd
Mosman, NSW 2088
0403077838

janine.painter2@gmail.com

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Assessments and therapy for children up to 18 years old

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Australia

Gaj Panagoda, BAppSc(Physiotherapy) MBBS FRACP FAFRM
Paediatric Rehabilitation, General Paediatrics

Practice / Clinic 1
Superkid Rehab
48 Annerley Road
Woolloongabba
Brisbane, QLD 4102

Practice / Clinic 2
Institute for Urban Indigenous Health
22 Cox Rd
Windsor
Brisbane, QLD 4030

http://superkidrehab.com.au/
07 3393 2001
info@superkidrehab.com.au

Hospital affiliations:

  • Queensland Children’s Hospital

>> Show more information about this practice/clinic

Superkid Rehab was established to provide community-based rehabilitation and disability care. We specialise in childhood conditions, seeing babies through to young adults (up to about 25 years old). The medical clinic works closely with local allied health and recreation providers to create practical, goal-directed management plans.

The Institute for Urban Indigenous Health is a network of clinics in South-East Queensland. We have a range of Indigenous health programs centred around community-based centres.

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Australia

Nicole Pates, Masters Paed Physio
Physio, OT, Psychology, Dietetics

Practice / Clinic 1
Western Kids Health
2/84 Matlock St.
Mount Hawthorn, WA 6016
http://www.westernkidshealth.com
0861122977
info@westernkidshealth.com

Practice / Clinic 2
Western Kids Health
17 Lemnos St.
Shenton Park, WA 6008
http://www.westernkidshealth.com
0861122977
info@westernkidshealth.com

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PAEDIATRIC REHAB

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Australia

Chloe Potter, BSc(Hons) Podiatry
Podiatry

Practice / Clinic 1
Suncoast Podiatry
35 Thomas Street
Noosaville, QLD 4566
http://www.suncoastpodiatry.com.au/childrens-podiatry/

Practice / Clinic 2
Suncoast Podiatry
14 Diamond Street
Cooroy, QLD 4563
http://www.suncoastpodiatry.com.au/childrens-podiatry/

Practice / Clinic 3
Suncoast Podiatry
Bli Bli Village
Southern Cross Parade
Sunrise Beach, Bli Bli QLD
http://www.suncoastpodiatry.com.au/childrens-podiatry/

0011617 5474 4070
potterpodiatry@gmail.com

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Children’s Podiatry, posture and gait clinic specialising in Hypermobility disorders

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Australia

Janice Price, PT
Physiotherapy
Child and Adolescent Development Unit Blue Mountains District ANZAC Memorial Hospital
Woodlands Road
Katoomba, NSW 2780

0247846671
janice.price@health.gov.nsw.au

Hospital affiliations:

  • Blue Mountains District ANZAC Memorial Hospital

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Physiotherapist in a Child and Adolescent Unit in the Blue Mountains of NSW. See children 0 – 18 years for developmental concerns.

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Australia

Annabel Ralph, BAppSc(Physiotherapy), BA(Dance)
Hypermobility, dancers and gymnasts, musicians, rock climbers, autonomic dysfunction, children and adolescents, DMA Clinical Pilates (MBCT), TMJ Dysfunction
Blackheath Physiotherapy & Pilates
2/35 Govetts Leap Rd
Blackheath, NSW 2785
http://www.blackheathphysiopilates.com/
0410699698
info@blackheathphysiopilates.com

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Physiotherapy clinic in Blue Mountains NSW with holistic approach to health. Physiotherapists trained in DMA Clinical Pilates (MBCT) and trained to incorporate Dance, Yoga, outdoor sports and Clinical Pilates in treatment. Also receives referrals for Women’s Health Physiotherapy (Samantha King, Lauren Lewis) and TMJ dysfunction (Annabel Ralph).

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Australia

Joanna Rives, PT
PT, OT

Practice / Clinic 1
Second Skin
Suite 604, 35 Spring St
Bondi Junction, NSW 2022

Practice / Clinic 2:
Second Skin
15/386 Scarborough Beach Rd
Osborne Park, WA 6087

Type of clinic: Both NHS and Private

https://www.secondskin.com.au/
02 93860812
Sydney@secondskin.com.au

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Second Skin provides custom made dynamic Lycra splints and compression garments. We can assist with improving joint stability, proprioception and help with pain management. We run clinics in all Australian states and territories, and all over the UK.

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Australia

Andrea Robertson, DO
Internal Medicine
Osteopath, Nutritionist, Naturopath
Southside Clinic
1 Hughes St
Unley, SA 05061
http://www.southsideclinic.com.au
1300 10 11 22
hello@southsideclinic.com.au

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At Southside Clinic we have helped over 10,000 patients get back to living a healthier pain free lifestyle.

Southside Clinic (originally Southside Osteopathy) was established in January 2008 when Dr Andrea Robertson started working in Adelaide as a sole-practitioner renting a single room in a multi-disciplinary clinic in Wayville.

In late 2008, Andrea expanded Southside Osteopathy to its first stand-alone location on Unley Road. From early 2010 until late 2012, Southside Osteopathy also had a clinic in Glenelg, but in late 2012, Andrea consolidated the two clinics into one larger clinic in Unley, expanding into next door and doubling the size of the original Unley Rd clinic. In November 2015, Andrea once again expanded with a new location and a new name, yet the same great service. We combined our Southside Barre studio with Southside Osteopathy into one large purpose built ‘Southside Clinic’ on Hughes St in Unley.

Southside Clinic is now one of Adelaide’s largest Allied Health clinic offering not just Osteopathy but also Physiotherapy, Massage, Clinical Pilates, Nutrition & Naturopathy, Psychology, Psychiatry and group fitness classes through our sister business The Barre Clinic.

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Australia

Darryn Sargant, BSc
Gait analysis, biomechancial asessment and correction, foot and lower limb pain, foot and lower limb dysfucntion , footwear prescription, orthotic therapy
Peak Podiatry Subiaco
211 Nicholson Road
Subiaco, Western Australia 6158
http://www.peakpodiatry.com.au/
+61 8 93889999
admin@peakpodiatry.com.au

>> Show more information about this practice/clinic

Peak Podiatry is very proud to be widely recognised as Perth’s premier Sports Podiatry practice. We are a professional Sports Podiatry practice specialising in the treatment of soft tissue injuries, sporting injuries and mechanical conditions of the foot and lower limb through biomechanical and gait analysis, diagnosis and management.
We have worked on the world stage. With over 100 years of combined experience our team is well equipped to deal with any problem, no matter how big or small.
Our team participates in regular in house and national training and development to ensure each member is providing the highest level of care and treatment consistently. Our team approach allows collaboration of ideas for those tricky cases. So in a sense, when you see one of us , you’re seeing all of us to make sure it’s your best foot forward.
Our team are part of Perth’s leading group of practitioners working and treating the in the are of hypermobility disorders of both adolescent and adults.

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Australia

Leanne Scown
Sports Physiotherapy, Clinical Pilates

Practice / Clinic 1
Olympic Park Sports Medicine Centre (Melbourne)
AAMI Park
60 Olympic Boulevard
Melbourne, VIC 3004
http://www.opsmc.com.au/
1300859887

Practice / Clinic 2
Olympic Park Sports Medicine Centre (Geelong)
30 Bellerine Street
Geelong, VIC 3220
http://www.opsmc.com.au/
1300859887

reception@opsmc.com.au

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12+ years of experience working with EDS and HSD patients. Manual therapy, exercise prescription and programming, Clinical Pilates

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Australia

Pauline Slater, PT
Paediatrics, Neuromuscular, Rehabilitation
Move to Learn-Learn to Move
Jennifer Ave
Allambie Heights, NSW 2100
https://www.movetolearn-learntomove.com/
0419978694
movetolearn.learntomove@gmail.com

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In my practice I am able to combine 25 years of Paediatric Physiotherapy and Classroom Teaching experience together to optimise children’s movement confidence and learning potential. I have specialised in Paediatric Movement Rehabilitation to ensure children are able to participate fully in everyday life. In the last 10 years I have specialised in working with children with Hypermobility Disorders, Specific Learning Difficulties (including: Dyslexia and Dysgraphia) and the impact of Poor Movement Coordination (DCD) and Fine and Gross Motor skills on a child’s educational, physical and social and emotional outcomes.

As she is both a physio and teacher I am able to assess and treat the child across a variety of areas of difficulties in a holistic manner…..Understanding little people come as a WHOLE package, and as such treatment works best when you work with the whole child!

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Australia

Rebecca Snowden
Paediatric Physiotherapist
The Physio Space
Suite 9, 68-70 Station Street
68-70 Station Street
Bowral, New South Wales 2576
http://www.thephysiospace.com.au/
02 4861 1223
info@thephysiospace.com.au

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Rebecca Snowden has been working with children with Connective Tissue Disorders throughout her 17 years of practice. She has developed a special interest in hypermobility disorders through her work with adolescent sporting injuries. The Physio Space provides Physiotherapy services to clients based on the condition of the patient. Rebecca’s interest in hypermobility means that all staff have an increased understanding of these disorders, not only in children but across the lifespan. The Physio Space is a well equipped clinic offering on-site clinical exercise therapy.

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Australia

Emma Staples, Occupational Therapist; Accredited Hand Therapist
Occupational Therapist

Practice / Clinic 1:
The Therapy Space WA
7 Hampden Road
Nedlands
Perth, WA 6006

Practice / Clinic 2:
The Therapy Space WA
Suite 5 Ground Floor Joondalup Private Hospital
60 Shenton Avenue
Joondalup, WA 6027

http://www.thetherapyspacewa.com.au/
9272 1424
admin@thetherapyspacewa.com.au

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See website for further details

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Australia

Louise Tofts, MBBS, DCH, MSpMed, FRACP, FAFRM
Paediatrics, Physical Medicine and Rehabilitation
Narrabeen Sports Medicine Center
Wakehurst Parkway
Narabeen, NSW 2101
http://narrabeensportsmedicine.com.au/paediatrics/dr-louise-tofts/
+61 2 99711188
admin@narrabeensportsmedicine.com.au

Hospital affiliations:

  • The Childrens Hospital at Westmead
  • Delmar Private Hospital, Dee Why

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Louise is an accredited rehabilitation physician and paediatrician holding Australian fellowships in both specialties and a Masters in Sports Medicine from The University of New South Wales. Louise currently practices at Kids Rehab the Children’s Hospital at Westmead, Narrabeen Sports Medicine Centre and Delmar Private Hospital. She trained and practiced in London, England at St Bartholomews Hospital, The Royal London Hospital and Great Ormond Street Hospital for Sick Children. She has expertise in hypermobility, persistent musculoskeletal pain, fatigue, difficulty learning motor skills, congenital musculoskeletal conditions, athletes with a physical disability and exercise and rehabilitation programs for children following injury or illness.

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Australia

Terry Wesselink
Pelvic health physiotherapy
VCRC Bladder and Bowel clinic
16 Martin Street
Heidelberg, Victoria 3084
http://www.continencevictoria.org.au/
+61 3 98168266
Info@continencevictoria.org.au

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VCRC is the peak body for Bladder and Bowel health in Victoria. We have a multidisciplinary clinic with nurses and physiotherapists. We are NDIS registered and can also see private clients. We welcome people of all ages, genders, sexual orientation, cultures who need assessments or treatments for Bladder, Bowel, Pain, Prolapse, Prostate and other pelvic issues. Our lead physiotherapist has a personal connection and experience with hEDS. We are always open to new knowledge and ideas, if we don’t know the answers we will try to find out.

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Australia

Marie Wilson, Physiotherapist
Chronic and Complex Pain
Complex Pain Management
82 Farnaham Road
Quakers Hill, NSW 2763
02 9837 7543
complexpain@ohmi.com.au

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We are a private Physiotherapy practice with 2 staff members that specialise in difficult pain problems. Both therapists have a Master of Science in Medicine in Pain Management and between us we have over 60 years experience in the management of all types of chronic and complex conditions. We have long appointment times and are commited to assisting people with chronic problems to live as full a life as possible.

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Australia

Hannah O’Connor, MClinExPHys, BachHealthSci (ExSci, Ex Phys, Nut), AEP, AES, ESSAM
Exercise Physiology
Kilmore Wellness Centre
44 Melbourne St
Kilmore, Vic 3764
Australia
0357822844
exphyskilmore@gmail.com

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Kilmore Wellness Centre is an allied health clinic including Exercise Physiology, Physiotherapy, Podiatry, Myotherapy & Dietetics.
We have 3 Exercise Physiologists that work across 6 days a week and 3 locations in Kilmore and Wallan.

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Australia

Sarah Plummer, Podiatrist
Biomechanical assessments and management of musculoskeletal injuries

Clinic 1
Kilmore & Wallan Podiatry
44 Melbourne St
Kilmore, VIC 3764
Australia
0357810652

Clinic 2
Kilmore & Wallan Podiatry
4/88 Watson St
Wallan, Vic 3756
United States
57831599

http://www.kilmorewallanpodiatry.com.au/
61408726949
sarahplummer@kilmorewallanpodiatry.com.au

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Kilmore & Wallan Podiatry work within the Kimore & Wallan Wellness Centres, so we work within a multi-disciplinary allied health clinic. We offer all kinds of podiatry care, but have a special interest in managing biomechanical/musculoskeletal injuries. We work with physiotherapists, exercise physiologists and myotherapists to manage these conditions, and use state of the art equipment for scanning and modelling orthotics.

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Austria

Ines Kapferer-Seebacher, DMD
Periodontist, Dental manifestations of rare diseases
Medical University of Innsbruck
Anichstr. 35
Innsbruck, Tyrol 6020
+004351250427221
ines.kapferer@i-med.ac.at

This professional is a member of the International Consortium on EDS and Related Disorders.

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The Medical University of Innsbruck is the main Hospital in Western Austria. Research on rare diseases with oral manifestations of our department combines genetical, molecular and histological analyses. In collaboration with the Division of Human Genetics, the genetical basis of periodontal Ehlers-Danlos syndrome has been defined in 2016. Research on the clinical presentation of periodontal EDS and the pathogenesis, as well as oral manifestations of various EDS subtypes is proceeding.

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Belgium

Inge De Wandele, PhD, PT, MT
Physiotherapy
Center for Medical Genetics, Ghent University Hospital
Corneel Heymanslaan 10
40
Ghent, East Flanders 9000
+32 9 332 36 03
inge.dewandele@ugent.be

This professional is a member of the International Consortium on EDS and Related Disorders.

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The Center for Medical Genetics is a reference center for patients with hereditary connective tissue disorders (HCTDs), including Ehlers-Danlos syndrome, Marfan syndrome, Osteogenesis imperfecta, and Stickler syndrome. The primary aim is to provide a detailed screening to assist the patient in finding the correct diagnosis. As a secondary aim, our team organizes information sessions for patients with HCTDs and education sessions for health care providers.

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Belgium

Charlotte Van Den Haute, PT
Psychomotor Therapy in Children, Physiotherapy in Children
Kinderkine Charlotte
Gustaaf Van der Steenstraat
10
Lennik, Vlaams Brabant 1750
Belgium
http://www.kinderkinecharlotte.be/
0477682600
info@kinderkinecharlotte.be

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Physiotherapy and psychomotor therapy for children and adolescents.

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Brazil

Márcia Cristina Matos Macêdo, MD
Physical Medicina and Rehabilitation

This professional is a member of the International Consortium on EDS and Related Disorders.

Practice / Clinic 1:
Centro de Saúde Cuidar-se
Avenida Ministro Barreto Sobral, 2131
Sala 804
Aracaju, Sergipe 49026010

Practice / Clinic 2:
Federal University of Sergipe – Hospital Universitário
R. Cláudio Batista, s/n
49060-025
Aracaju, Palestina Aracaju
http://www.ebserh.gov.br/web/hu-ufs

+55 (79) 98822 9954
marciafisiatria@gmail.com

Hospital affiliations:

  • Hospital Universitário – Federal University of Sergipe
  • Hospital Primavera

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I decided to face Ehlers-Danlos Syndrome and its manifestations. Each patient should have the opportunity of develop a treatment program by the physical and rehabilitation medicine. I am a hipermobility Ehler Danlos patient and i love to research, study and share my experience and knowledgment with others.

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Canada

Brianne Burton, PT
Physiotherapist
Ehlers Danlos Syndrome Clinic, The Hospital for Sick Children
555 University Avenue
Toronto, Ontario M5G 1X8
http://www.sickkids.ca/areas-of-care/clinics/EDS-clinic.html
416-813-6755
brianne.burton@sickkids.ca

Hospital affiliations:

  • The Hospital for Sick Children

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The EDS Clinic at SickKids, Toronto was established in January 2017. We are partnered with the adult EDS Clinic at the Toronto General Hospital, part of the University Health network. The mission of the EDS Clinic is to support patients and families living with EDS by providing timely diagnosis, coordination of medical care, education and expertise in the treatment and management of EDS.

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Canada

Mercedes Eustergerling, PT
Pelvic health, women’s health, chronic pain, orthopaedics
Vida Health & Wellness
#203 – 1640 16 Ave NW
Calgary, Alberta T2M 0L6
https://www.vidahealth.ca/
403-815-0986
info@vidahealth.ca

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Vida Health & Wellness is a physiotherapy clinic in Calgary, Canada specializing in women’s health, chronic pain, and complex conditions. We have extensive experience with Ehlers Danlos Syndrome and welcome individuals to come and see us for help with their condition. Our physiotherapist takes a different approach than most: she listens, she doesn’t use machines, and she works toward your goals. All of this results in less pain and improved function! For those with pelvic organ prolapse, we also offer pessary fittings with very short wait times (under 1 month). This condition is common in women with EDS and it can be difficult to get timely care. Online booking, free parking, and a child-friendly facility are available. We direct bill to most insurance companies.

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Canada

Josee Larochelle, MD, FRCPC, MBA
Physical Medicine & Rehabilitation
CHU Sainte-Justine
3175 Chemin de la Côte-Sainte-Catherine
Quebec H3T1C5
https://www.chusj.org/en/Home
514-345-4931 extension 5865
Noneavailable.hsj@ssss.gouv.qc.ca

Hospital affiliations:

  • CHU Sainte-Justine
  • CHU Sherbrooke Fleurimont

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I run a once weekly clinic where I see, among others, patients with hypermobility disorder. They are often referred to me by the Pain Clinic, Paediatricians, General practitioners, Family doctors, Orthopaedic surgeons or Physiotherapists when a patient presents with unexplained pain and/or a musculoskeletal condition. There is easier access to a rehabilitation team at our hospital once a diagnosis has been established especially if pain is at the forefront at time of referral. I also work with community therapists if patients find it easier to have treatment sessions locally. I see patients who live around the Montreal area and anywhere in the province of Quebec if local expertise is not available. I am also open to see outof-province patients if local expertise is not available as long as there is a provincial health coverage in their province. I speak French, English and Spanish fluently.

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Canada

Ranita Manocha, MD, MSc, FRCPC, CSCN (EMG)
Physical Medicine & Rehabilitation; Electromyography
Practice / Clinic 1
Bracing Clinic
Foothills Medical Centre
Room AC144, Special Services Building, 1403 – 29th Street NW
Calgary, Alberta T2N 2T9
403-944-4224
noemail@noemail.com

Hospital affiliations:

  • Foothills Medical Centre
  • South Health Campus

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I treat patients with complex bracing needs for the extremities and spine and provide education on joint protection strategies for patients with joint hypermobility, Ehlers-Danlos and its various subtypes, Marfan’s syndrome, Down syndrome, and Larsen syndrome. I have a practice centred on patient goals. Referrals must be made by a family doctor or specialist physician. Please include any consultations from medical geneticists and any relevant genetic testing. Patient-centred research is a focus of this practice and patients may be asked to participate in quality of life and biomechanical studies.

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Canada

Nimish Mittal, MBBS, MD, MSc
Physical Medicine and Rehabilitation, Anesthesia, Clinical Genetics, Gastroenterology, Cardiology, Respirology, Neuro radiology, Exercise Physiology, Neurosurgery
GoodHope EDS Clinic – Toronto General Hospital, University Health Network
GoodHope EDS Clinic – Toronto General Hospital
200 Elizabeth Street
Toronto, Ontario M5G 2C4
https://www.uhn.ca/MCC/PatientsFamilies/Clinics_Tests/Ehlers-Danlos_Syndrome_Clinic
416-340-4800 Ext 6536
Vanessa.Armstrong@uhn.ca

This professional is a member of the International Consortium on EDS and Related Disorders

Hospital affiliations:

  • University Health Network, Toronto

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An interdisciplinary team, located at Toronto General Hospital, consists of a core EDS team and a number of specialists who have a dedicated interest in the diagnosis, interdisciplinary management and research to find a cure for EDS. The core EDS team members conduct assessments, make a treatment care plan and refer to clinical specialists when indicated.

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Canada

Constance (Connie) O’Connor, MN, RN(EC)
Acute Care Nurse Practitioner – Paediatrics
Ehlers-Danlos Syndrome Clinic, The Hospital for Sick Children
555 University Avenue
Toronto, Ontario M5G 1X8
http://www.sickkids.ca/areas-of-care/clinics/EDS-clinic.html
416 813-2191
constance.oconnor@sickkids.ca

Hospital affiliations:

  • The Hospital for Sick Children

This professional is a member of the International Consortium on EDS and Related Disorders.

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The EDS Clinic at SickKids, Toronto was established in January 2017. We are partnered with the adult EDS Clinic at the Toronto General Hospital, part of the University Health network. The mission of the EDS Clinic is to support patients and families living with EDS by providing timely diagnosis, coordination of medical care, education and expertise in the treatment and management of EDS.

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Canada

Kathryn Walker, PhD
Psychologist

Practice / Clinic 1
Ehlers-Danlos Syndrome (EDS) Clinic
The Hospital for Sick Children
555 University Ave
Toronto, ON M5G 1X8
http://www.sickkids.ca/areas-of-care/clinics/EDS-clinic.html

Practice / Clinic 2
Ehlers-Danlos Syndrome (EDS) Clinic
Toronto General Hospital
585 University Ave
Toronto, ON M5G 2N2
http://www.uhn.ca/MCC/PatientsFamilies/Clinics_Tests/Ehlers-Danlos_Syndrome_Clinic/

416-813-8284
katie.walker@sickkids.ca

Hospital affiliations:

  • The Hospital for Sick Children
  • Toronto General Hospital, University Health Network

This professional is a member of the International Consortium on EDS and Related Disorders.

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The Ehlers-Danlos Syndrome (EDS) Program is a collaboration between University Health Network (UHN) and The Hospital for Sick Children (HSC) and focuses on clinical care, education, and research. This joint program provides a centralized approach in the diagnosis and management of EDS in Toronto, Ontario, Canada.

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Canada

Gennady Vaserbakh, DO
Osteopathic Practitioner
Allevio Pain Management
240 Duncan Mill Rd #101,
Toronto, Ontario M3B 3S6
Canada
http://allevioclinic.com/
6474788462
gennady.vaserbakh@allevioclinic.com

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Treat a wide variety of chronic pain conditions including hyper-mobility disorders.

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Chile

Jaime Bravo, MD
Rheumatologist, EDS spécialist, Dysautonomia.Osteoporosis
Private practice
Luis Thayer Ojeda 0115. of 303
Las Condes
Santiago, RM 7560920
http://www.reumatologia-dr-bravo.cl
56-9-9826-2320
jaime.bravos@gmail.com

Hospital affiliations:

  • San Juan de Dios Hospital. Santiago. Chile

This professional is a member of the International Consortium on EDS and Related Disorders.

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I am a Rheumatologist in private practice. For the last 20 years I have been treating EDS patients. I also treat Dysautonomia and Osteoporosis. Mine is a solo practice.

For my CV and activities, please see my Web Page, that has had 450,000 visits. www.reumatologia-dr-bravo.cl

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Finland

Karin von Smitten-Stubb, PT
Physiotherapist
Orton
Tenholantie 10
Helsinki, Helsinki 00280
Finland
http://www.orton.fi/
0505819191
Karin.vonsmitten-stubb@orton.fi

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Orton is a private hospital and rehabilitering center. We have a pain clinic with a multi professional team. The hospital is specialized in orthopedic surgery. We also have pain rehabilitation courses.

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France

Karelle Benistan, MD
EDS, Pain Management, Medical Genetics
Raymond Poincaré Hospital, EDS French National Reference Center
104 boulevard Poincaré
Garches, Hauts de Seine 92380
http://raymondpoincare.aphp.fr/syndromes-dehlers-danlos/
+33147104428
secretariat.sed@aphp.fr

Hospital affiliations:

  • Raymond Poincaré Hospital

This professional is a member of the International Consortium on EDS and Related Disorders.

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The care of patients with EDS is a recognized activity of Dr. Bénistan. She takes care of a large cohort of EDS patients.

Since 2007, Dr. Bénsitan has been part of the EDS National Reference Center, has been certified by the Ministry of Health and has participated in the national care of non vascular EDS patients. She acts as a scientific counselor for French patients’ associations.

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India

Deepak Sharan, MBBS, MS Ortho, DNB Ortho, Dip Ortho, M Sc
Orthopaedic Surgery, Rehabilitation, Musculoskeletal and Pain Medicine
RECOUP Neuromusculoskeletal Rehabilitation Centre
312 Further Extension of Anjanapura Layout, 10th Block
LB Shastri Nagar
BANGALORE, KARNATAKA 560108
India
http://www.recoup.in
919845155449
drdeepaksharan@yahoo.com

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RECOUP is an Internationally recognised centre of excellence, specializing in the prevention, assessment, treatment and research of EDS and related disorders, Chronic Pain, Neuromusculoskeletal Disorders and Childhood Disabilities. RECOUP is led by Dr Deepak Sharan, who has over 28 years of clinical experience in the UK and India, and leads a large team of highly trained, qualified, experienced and reputed Physicians and Rehabilitation Professionals. RECOUP offers a Physician led, intensive, comprehensive, interdisciplinary rehabilitation approach under one roof. It follows a Holistic and Evidence-Based Treatment approach, incorporating all available effective treatment modalities, both mainstream and alternative. It provides individualised care focusing on client satisfaction and clients report lasting recovery due to meticulous attention towards predisposing factors (e.g., posture, pain related fear, kinesiophobia, stress, nutrition, habitual deep muscle tension, medical co-morbidities) instead of just symptomatic relief.

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Italy

Marco Castori, MD, PhD
Medical Genetics
Division of Medical Genetics – IRCCS Casa Sollievo della Sofferenza
Viale Padre Pio 7
Poliambulatorio – 2nd Floor
San Giovanni Rotondo (Foggia), Italy 71013
https://www.operapadrepio.it/it/genetica-medica.html
+393441115621
m.castori@operapadrepio.it

This professional is a member of the International Consortium on EDS and Related Disorders.

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Head of the Division of Medical Genetics at the IRCCS-Casa Sollievo della Sofferenza; institutional representative at the Regional Round Tables for Rare Diseases and Medical Genetics. Member of the Medical and Scientific Board of the international Ehlers-Danlos Society. Member of the professional board of various Italian patients’ associations for rare diseases. Marco Castori’s major research topic is joint hypermobility and the related Ehlers-Danlos syndromes. About one-third of his scientific production is dedicated to this argument and he is recognized as international expert in this field. Additional interests include clinical dysmorphology, genetic skin disorders and mosaicisms, neurodevelopmental disorders and fetopathology. Marco Castori is author and co-authors of 166 publications which include 149 articles in peer-reviewed international journals and 17 book chapters. He was ad hoc reviewer for more than 70 international scientific journals and Guest Editor for an issue dedicated to Ehlers-Danlos syndromes of the American Journal of Medical Genetics Part A. He was the recipient of the 2015 Opitz’s Young Investigator Award.

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Ireland

David Mitchell, MB, BCh, BAO, MICGP
General pratice
Clongriffin Medical Centre
17 Main Street, Clongriffin
Dublin
Dublin, Dublin D13
Ireland
+3538285492
infor@clongriffinmedical.ie

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I have a special interest in musculosketal disorders. I do diagnostic ultrasound and joint and soft tissue injections for various problems.

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Netherlands

Emile Janssen, MD
Consultant in physical medicine and rehabilitation

Practice / Clinic 1
Ortius
Kanaalweg 16
Utrecht, Utrecht 3526 KL
http://ww.ortius.nl

Practice / Clinic 2
Ortius Roermond/Swalmen
Groenewoud 4
Swalmen,Limburg 6071 RB
http://ww.ortius.nl

Practice / Clinic 3
Ortius Enschede
Capitool 9
Enschede,Overijssel 7521 PL
http://ww.ortius.nl

+31 85 0700100
eds@ortius.nl

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Expert clinic in diagnosis and rehabilitation treatment of patients with hEDS and HSD.

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New Zealand

Fraser Burling, Dr.
General Medicine, Rheumatology, Soft Tissue treatments, Ehlers-Danlos Syndrome
Rheumatology and Musculoskeletal Clinic
5/110 Remuera Road
Remuera
Auckland, Auckland 1050
http://www.prolotherapy.co.nz/Home_Page.html
+6495299348
backtolife@iconz.co.nz

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At the Rheumatology and Musculoskeletal Clinic we offer a wide range of general medical and rheumatology services. We also treat chronic soft tissue injuries, and joint dislocations in all patients who have chronic injuries. I have sub-specialised in Ehlers-Danlos syndrome, including the pain/injury related processes with it, and use prolotherapy in these patients with very good results. https://bmjopensem.bmj.com/content/5/1/e000481 As New Zealand doesn’t have any other EDS specialists yet, I look to, and rely on, our international EDS team for guidance when patients have complex issues.

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New Zealand

Sharon Peck, Dip Phys
Physiotherapist with a special interest in orthopaedics, connective tissue disorders-hypermobility and fascial scarring, arthritis, cranial mobilisations, Temperomandibular disorders.
Sharon Peck, Physiotherapy
70 Morgans Road
Timaru, South Canterbury 7910
0064 210603341
ppigarthritis@gmail.com

Hospital affiliations:

  • Timaru Public Hospital

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Sharon was an inaugural member of the Hypermobility Club of London and the South East, UK, led by Prof Rodney Graeme. She was a national physiotherapy advisor for the Hypermobility Syndrome Association, UK, presenting at their annual conferences and a contributing author for a booklet “Hypermobility in Children”.

Since emigrating to New Zealand in 2004 Sharon has set up Physiotherapy Led Orthopaedic Clinics in Timaru and is the Clinical Leader for the Physiotherapy Primary Intervention Group. This team of physiotherapists treat arthritis in the South Canterbury community under MoH and District Health Board contracts.

In her part time private practice Sharon receives referrals from GPs and Consultants, as well as self referrals for children and adults suffering from the various problems of connective tissue disorders, in particular Generalised Joint Hypermobility (GJH) and fascial scarring.

Sharon has presented to physiotherapists and doctors in the South Island on the the management of GJH and fascial scarring. She mentors colleagues, within and outside of her district, to support them as they manage patients with the often bewildering symptoms of hypermobility.

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New Zealand

Matthew Preston, FRANZCR; M.B.B.Ch
Radiology
Whakatane Hospital
Stewart Street
Whakatane, Bay of Pleny 3120
http://matpre.nz/
+64 7 3060878
Contact@matpre.nz

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At the moment I am only able to offer advice and guidance to GPs or other doctors or health care professionals with EDS or potential EDS patients. An actual clinic may be possible in the 2nd half of 2019. I am able to offer imaging guided sclerosant prolotherapy. In the public hospital service this must be a specialist referral and the patient in the Bay of Plenty District Health Board catchment area. Broader options for privately funded patients in private practice.

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Japan

Tomoki Kosho, MD, PhD
Medical Genetics
Rare type
3-1-1
Asahi
Matsumoto, Nagano
390-8621
+81-263-35-4600
ktomoki@shinshu-u.ac.jp

Hospital affiliations:

  • Center for Medical Genetics, Shinshu University Hospital

This professional is a member of the International Consortium on EDS and Related Disorders.

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Genetic counseling, genetic testing, and all kinds of genetic services for connective tissue disorders including EDS

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Poland

Ewelina Prekiel, PT
orthopaedics
Rehmedis
Aleje Jerozolimskie 91
Warsaw
Warsaw, City Center 02-001
http://www.rehmedis.pl
22 247 83 37
eprekiel@gmail.com

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8 years experience in physiotherapy. I deal with many orthopaedic cases, also EDS. Postgraduated courses: IAOM, PNF, Fascial Manipulation, Kaltenborn, FDM.

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Spain

Antonio Bulbena, MD, PhD, MSc (Cantab)
Psychiatry
Institute Neuropsychiatry and Addictions. Hospital del Mar.
Institute Neuropsychiatry and Addictions.
Parc de Salut. Hospital del Mar.
Paseo Maritimo 25, Barcelona
Barcelona 08003
+34 932483495
abulbena@parcdesalutmar.cat

Hospital affiliations:

  • Institute Neuropsychiatry and Addictions
  • Department Psychiatry and Forensic Medicine. Universitat Autonoma Barcelona

This professional is a member of the International Consortium on EDS and Related Disorders.

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Attending all type of psychiatric patients, but more especialized in Anxiety disorders, and all those disorders in the borderland between psychiatry-psychology and medicine.

Intensive academic carreer and carried out research in different areas, such as anxiety, EDS, Depression, meteorology, etc.

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Spain

Vicenç Gilete, MD
Neurosurgery
Chiari and Hypermobility Barcelona
Centre Medic Teknon, carrer Vilana 12
consultorio 109
Barcelona, Barcelona 08022
https://drgilete.com
+34 932202809
assist@drgilete.com

Hospital affiliations:

  • Centre Medic Teknon

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We are a group of neurosurgeons based in Barcelona, focused on treating the disorders and conditions related to hypermobility and Chiari. Dr Bartolomé Oliver and Dr Vincenç Gilete officially formed a surgical team and partnership in 2015, specializing in the treatment of hypermobility and craniocervical instability. Previously each doctor worked in separate neurosurgical clinics but after seeing the need for focused attention to this very underserved community of patients, a partnership was formed. They bring over 50 years of combined experience in Neurosurgery to serving patients with Ehlers-Danlos Syndrome.
Our team in the operating room as well as our care team of doctors, specialists, and nurses are experienced in dealing with the issues unique to EDS patients. We strive provide the highest level as we participate in this process of healing and improved quality of life afforded to our patients by our team of dedicated and qualified caregivers.

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Switzerland

Gere Luder, PT MSc
Physiotherapy

Practice / Clinic 1
Department of Physiotherapy, Inselspital, Bern University Hospital
Freiburgstrasse 10
PH2 A07
Bern, Bern
3007
http://www.physio.insel.ch

Practice / Clinic 2
Physio Burgernziel
Therapie & Training
Thunstrasse 99
Bern, Bern 3006
http://www.physio-burgernziel.ch
+41 31 352 11 52
gere.luder@physio-burgernziel.ch

Hospital affiliations:

  • Department of Physiotherapy, Inselspital, Bern University Hospital

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My interest and competency in the field of EDS/ Generalized Joint Hypermobility (GJH) is two-fold:

As a physiotherapist I treat regularly patients having various musculoskeletal problem associated with EDS and GJH. The main focus of the therapy is function-centred including pain relief, improvement of muscle function and joint stability, as well as advice for daily life activities or sports.

As a researcher I am interested in the biomechanical background of joint hypermobility and the possibilties to reduce symptoms and to improve joint stability and daily life activity. At Bern University Hospital we yet performed several research projects and are still engaged in the topic.

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Switzerland

Marianne Rohrbach, MD, PhD
Paediatrician and Geneticist
University children’s Hospital Zurich
Steinwiesstrasse 75
Division of metabolism
Zurich, 8032
+41442667111
marianne.rohrbach@kispi.uzh.ch

Hospital affiliations:

  • Associated Professor

This professional is a member of the International Consortium on EDS and Related Disorders.

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The Division of Metabolism at the University Children’s Hospital Zurich has a long standing international reputation as one of the leading diagnostic and research centres for CTD world-wide. Furthermore, the Division is dedicated to the management and counselling of patients and their families. In this position, the Division can count on a relevant and over the years increasing number of patients referred from European, Pan-Asian, Australian and Arabian countries. During a one-year period we see approximately 70 new patients with CTD in our outpatient clinic. Single observations have turned out to become seminal models for biologically new and surprising concepts and the same is expected in the future.

We have established a multidisciplinary CTD clinic including clinical, biochemical and molecular diagnosis with a particular focus on long term follow up and natural history of CTD.

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Turkey

Alime GONEN, DPT
Pelvic health physiotherapy, pelvic pain.
Akdeniz University Physiotherapy and Rehabilitation Department
Akdeniz University
ANTALYA, Turkey 07059
+905543239836
alimebuyuk@gmail.com

This professional is a member of the International Consortium on EDS and Related Disorders.

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My practice is in Physiotherapy and Department of Obstetrics & Gynecology, Akdeniz University Hospital. My interest is pelvic pain and pelvic health physiotherapy which is focused on endometriosis and Ehler Danlos Syndromme related disorders.

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Turkey

Özkan ÖZDAMAR, MD
Obstetrics and Gynecology
Istanbul Medeniyet University, School of Medicine
Istanbul Medeniyet University, School of Medicine, Goztepe Training and Research Hospital, Department of Obstetrics and Gynecology
Goztepe, Kadikoy
Istanbul, 34740
+90216 5714401
ozkan_ozdamar35@hotmail.com

This professional is a member of the International Consortium on EDS and Related Disorders.

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I practice in the Division of Reproductive Endocrinology and Infertility, Department of Obstetrics & Gynecology, Istanbul Medeniyet University, School of Medicine, Goztepe Training and Research Hospital. We have recently designed and are about to open an Endometriosis Clinic, which will be focused on endometriosis-related disorders, including pelvic pain.

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United Kingdom

Qasim Aziz, PhD, FRCP
Neurogastroenterology
1. Barts Health NHS Trust;
2. The London Digestive Centre;
3. The Physicians Clinic
26 Ashfield Street
London, LONDON
E1 2AJ
https://thephysiciansclinic.co.uk/physicians/professor-qasim-aziz/
+44 (0)20 3594 3500 for NHS; +44 (0)20 7034 5017
Sandra.Morris@bartshealth.nhs.uk

Type of clinic: Both NHS and Private

Hospital affiliations:

  • The Royal London Hospital
  • Princess Grace Hospital
  • The Harley Street Clinic (The Physicians Clinic)

This professional is a member of the International Consortium on EDS and Related Disorders.

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As a neurogastroenterologist, I specialise in diseases of the gut that affect its nervous system, muscles and connective tissue. I also specialise in gut symptoms that occur due to abnormal communication between the brain and the gut such as in stress. The patients I see most commonly are those with complex unexplained gastrointestinal disorders. I work in a multidisciplinary way with pain specialists, dieticians and psychologists. I have access to sophisticated diagnostic techniques to investigate gut function and use these to guide treatment.

My clinical interests are in Functional Gastrointestinal Disorders e.g. Irritable Bowel Syndrome, Functional Dyspepsia etc; abdominal pain; gastrointestinal motility disorders and gastrointestinal manifestations of systemic disease e.g. diabetes, neurological disorders and connective tissue disorders like scleroderma and I have a particular research and clinical interest in gut manifestations of Ehlers-Danlos Syndrome.

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United Kingdom

Kate Barnes, BM DRCOG MRCGP MDCH
General Practice, Clinical Hypnosis, Cognitive Behaviour Therapy
Dr Kate Barnes
10 Harley St
Marylebone, London W1G 9PF
http://www.drkatebarnes.co.uk/
02072990385
katebarnesgp@gmail.com

Type of clinic: Private

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I have been an NHS GP for more than 25 years but as a result of being diagnosed with Hypermobility EDS in 2015 have now moved into Private Practice with a Special Interest in the Ehlers-Danlos Syndromes, PoTS and Mast Cell Disorders. I have always had an interest in Mind-Body Medicine and have also been practising in Clinical Hypnosis & Cognitive Behaviour Therapy since 2009. This often works well in tandem with a my general medical background in finding ways to improve the health of patients with more complex problems such as medically unexplained symptoms.

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United Kingdom

Angela Brady, FRCP, PhD
Consultant Clinical Geneticist
EDS National Diagnostic Service, London, UK
Northwick Park Hospital
Watford Road
Harrow, London HA1 3UJ
https://www.lnwh.nhs.uk/services/a-z-services/e/ehlers-danlos-syndrome-national-diagnostic-service/
0208 869 3166
LNWH-tr.EDSLONDONOFFICE@nhs.net

Type of clinic: NHS

This professional is a member of the International Consortium on EDS and Related Disorders.

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The national Ehlers-Danlos syndrome diagnostic service is a specialist service for individuals and families who are suspected to have complex Ehlers-Danlos syndrome (EDS).

The service focuses on diagnosing complex EDS. Sometimes, it may be more appropriate for an individual to see their local general clinical genetics team in the first instance who can refer on to us if there is a complex diagnostic question. When the main issues are managing the day-to-day aspects of EDS it can be more useful to be referred to other specialists such as rheumatologists, physiotherapists or paediatricians.

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United Kingdom

Nigel Burrows, MD FRCP
Dermatology
Department of Dermatology
Addenbrooke’s Hospital, Cambridge University Hospitals NHS Foundation Trust
Hills Road
Cambridge, Cambridgeshire
CB2 0QQ
+44 1223 216459
nigel.burrows@addenbrookes.nhs.uk

Type of clinic: NHS

This professional is a member of the International Consortium on EDS and Related Disorders.

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Dr Nigel Burrows is a consultant dermatologist at Addenbrooke’s Hospital in Cambridge. He runs a genetic dermatology service with a particular emphasis on patients with Ehlers-Danlos syndromes. He works closely with other disciplines in the management of EDS.

He is a Medical Advisor for two UK EDS charities and is a member of the International Consortium on the Ehlers-Danlos Syndromes and Chair of the International EDS Skin Group Committee.

He is involved in research in EDS and has written chapters on inherited disorders of connective tissue for several of the major dermatology and paediatric dermatology textbooks.

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United Kingdom

Aisling Condon, PT
Physiotherapy, Hydrotherapy, Hypermobility, Pilates, Functional Movement Training
Central Health Physiotherapy and Hydrotherapy
Margaret Thatcher Infirmary, The Royal Hospital Chelsea
Royal Hospital Road
London, Greater London SW3 4SR
http://www.central-health.com
020 7404 6343
acondon@central-health.com

Type of clinic: Private

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Central Health Physiotherapy is a musculoskeletal physiotherapy and hydrotherapy clinic, linked to the London Hypermobility Unit at the Wellington Hospital.

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United Kingdom

Neeti Ghali, MBChB, MRCPCH, MD
Clinical Genetics
EDS National Diagnostic Service, London
Northwick Park Hospital
Watford Road
Harrow, London
HA1 3UJ
https://www.lnwh.nhs.uk/services/a-z-services/e/ehlers-danlos-syndrome-national-diagnostic-service/
0208 869 3166
LNWH-tr.EDSLONDONOFFICE@nhs.net

Type of clinic: NHS

This professional is a member of the International Consortium on EDS and Related Disorders.

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The national Ehlers-Danlos syndrome diagnostic service is a specialist service for individuals and families who are suspected to have complex Ehlers-Danlos syndrome (EDS).

The service focuses on diagnosing complex EDS. Sometimes, it may be more appropriate for an individual to see their local general clinical genetics team in the first instance who can refer on to us if there is a complex diagnostic question. When the main issues are managing the day-to-day aspects of EDS it can be more useful to be referred to other specialists such as rheumatologists, physiotherapists or paediatricians.

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United Kingdom

Louise Grant, MCSP
Physiotherapy, Special interest in Hip problems, EDS/HMSD, pilates, hydrotherapy
Physiocure
Physiocure, Cookridge Hall Health & Fitness
Cookridge Lane
Leeds, West Yorkshire LS16 7NL
http://www.physiocure.org.uk
01132611999
enquiries@physiocure.org.uk

Type of clinic: Private

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Multi-Disciplinary clinic consisting of Physiotherapists, Occupational Therapists, Pilates instructors, Psychotherapist/counsellor, Physical Trainers who have a special interest in complex hip, knee and shoulder problems, hypermobility and EDS. Located in Leeds, Yorkshire, UK. Please find out more on our website.

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United Kingdom

Alan Hakim, MA FRCP
Rheumatology, General Medicine
The London Hypermobility Unit
Level 3, The Platinum Medical Centre, The Wellington Hospital
15-17 Lodge Street
St John’s Wood, London
NW8 7JA
http://www.thelondonhypermobilityunit.co.uk
contact@alanhakim.com

Type of clinic: Private

This professional is a member of the International Consortium on EDS and Related Disorders.


United Kingdom

Anna Hutchinson, DClinPsy
Clinical Psychology
The Integrated Psychology Clinic
55 Queen Anne Street
Marylebone
London, London W1G 9JR
https://www.integrated-psychology-clinic.com/
07594 148207
admin@integrated-psychology-clinic.com

Hospital affiliations:

  • The Wellington

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We are a small group of professional, experienced and compassionate clinical psychologists who are all highly experienced in working with people diagnosed with EDS or hyper mobility. Amongst other things, we can support people by providing pain management programmes, support in returning to school or work, adjusting to their diagnosis, or in managing associated mental health difficulties such as anxiety or depression.

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United Kingdom

Andre Le Leu, Bsc(Physiology),BPHTY(Physiotherapy), BESS, EUSSER
Complex pain, Orthopedic Rehabilitation, Complex Instability (Upper Limb)

Practice / Clinic 1:
Hi Physio Motion
3 Broadbent Close
Highgate
London, Middlesex N6 5JW

Practice / Clinic 2:
Hi Physio Motion
The Elms Consulting Rooms
24 Hall Place Gardens
St Albans, Hertfordshire AL1 3SF

http://hiphysiomotion.co.uk/
02083414235
andreleleu@hiphysiomotion.co.uk

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I run a small private practice in Highgate, London and in St Albans, Hertfordshire. I retain a comprehensive clinic treating the whole spectrum of Orthoapedic, Sporting and Rheumtolgy cases.

My specialist interest lies in complex shoulder and elbow pain/instability dysfunctions. The majority of this lies in the hypermobile spectrum but by no means exclusively. I work closely with a wide range of Rheumatology, Pain, Psychology, and Orthopedic specialists across the Southeast of England. I am registered with almost all UK based health insurance companies.

My ethos is ‘simplexity’, that means I take a very clear and simple approach to complex problems. If you would like to arrange an appointment to discuss a particular issue I would be more than happy to give a clear, simple, and professional opinion.

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United Kingdom

Gayatri Mittal, MD, PhD, MRCP
General Rheumatology

Practice / Clinic 1:
Royal National Orthopedic Hospital
Rheuamtology Department
Brockley Hill
Stanmore, Middlesex HA7 4LP
https://www.rnoh.nhs.uk/

Practice / Clinic 2:
The Wellington Hospital
The Platinum Medical Centre
Lodge Road
London, London NW8 7JA
https://www.thewellingtonhospital.com/

Practice / Clinic 3:
The London Clinic
5 Devosnshire Place
London, London W1G 6HL
https://www.thelondonclinic.co.uk/

Practice / Clinic 4:
Spire Bushey Diagnostic Centre
290 Centennial Park
Elstree, Borehamwood WD6 3SU
https://www.spirehealthcare.com/bushey

07741 470114
secretary2@drmittal.uk

Type of clinic: Both NHS and Private

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I am a Consultant Rheumatologist and clinical lead for Ankylosing Spondylitis services at Royal National Orthopaedic Hospital, Stanmore. I also hold appointment of Honorary Clinical Senior Lecturer, University College of London . I currently conduct specialist clinics in Hypermobility, Ankylosing Spondylitis, Psoriatic arthritis at RNOH. I have private clinics at the Platinum Medical Centre, Hospital of St John and St Elizabeth, The London Clinic, Spire Bushey Hospital, One stop Doctors and RNOH.

I am experienced in managing the whole spectrum of common and uncommon rheumatologic disorders. My special clinical interests include hypermobility, early inflammatory arthritis, early inflammatory low back pain, gout and complex systemic rheumatic diseases.

I am currently researching on metabolomics in hypermobility and newer ways of delivering treat-to-target goal in early rheumatoid arthritis. My specialist training in the UK includes North East Thames Rheumatology Rotation, Clinical Research Fellowship at Bangor, North Wales and undertaking PhD at Bone and Joint Research Unit, London. I was awarded a clinical excellence award in 2016.

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United Kingdom

Catherine Nutt, PT
Sports medicine, musculoskeletal outpatients
Central Health
The Royal Hospital
Royal Hospital Road
London, London SW3 4SR
http://www.central-health.com
02074046343
cnutt@central-health.com

Type of clinic: Private

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A musculoskeletal physiotherapy clinic. I offer both hydrotherapy and physiotherapy.

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United Kingdom

Jane Simmonds, DProf, MA, PGDip, BAppSc, BPE, MCSP, MACP, SFHEA
Physiotherapy, Hypermobility, EDS, sports and performing arts injuries, chronic fatigue, pain,
Central Health Physiotherapy and London Hypermobility Unit
Platinum Medical Centre
Wellington Hospital
15-17 Lodge Rd, London NW8
https://www.central-health.com/services/hypermobility/index.html
0203 8058525
Stjohnswood@central-health.com

Type of clinic: Private

Hospital affiliations:

  • Wellington Hospital

This professional is a member of the International Consortium on EDS and Related Disorders.

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The London Hypermobility Unit comprises of clinicians with specialist knowledge and interest in managing hypermobility related problems. Following a thorough assessment, I provide a comprehensive functional and evidence based management plan for children and families.

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United Kingdom

Dawn Shailer, BScPod, MaDipSW
Hypermobility Syndromes, Aspergers, autism, good awreness of epilepsy, C.Palsae, Osteoomega imperfecta
Foot Cares
The Natural Fitness and Therapy Centre
Royal Parade
Eastbourne, East Sussex BN227AQ
http://www.Footcares.co.uk
01323 732024
dawnshailer@hotmail.com

Type of clinic: Private

Hospital affiliations:

  • Eastbourne District General
  • University College London
  • North Staffordshire

This professional is a member of the International Consortium on EDS and Related Disorders.

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Podiatry services including orthotics prescription. I have over 15 years of disability specialist Social Work assessment and additional training in Hyper mobility Syndromes, Leg length discrepency, Acupuncture for podiatry. Particular interests inclue pain management and rehabilitation after injury.
I use a patient centred approach to consider management of the hypermobile foot specifically tailored towards the individual and have a special interest in imaging. I have a diagnosed Hypermobility Spectrum Disorder myself and use research and aids and adaptations.

I am current and constantly ahead of research into the Hypermobility Syndromes and will do home visits if the centre is in accessible.

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United Kingdom

Professor Suranjith Seneviratne, DPhil(Oxon), MBBS, MD, MRCP, DPath, MRCPath, FRCP, FRCPath, FCCP
Clinical Immunology, Allergy, Immunogenetics

Practice / Clinic 1
Allergy and Immunology
Lindo Wing St Mary’s Hospital
Praed Street
London, London W2 1NY

Practice / Clinic 2
Colombo Allergy Immunology Clinic
Central Hospital
114 Norris Canal Road
Colombo 10, Western Province 01000

00447508976860
pa@allergyimmunology.co.uk

Type of clinic: Private

This professional is a member of the International Consortium on EDS and Related Disorders.

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Assessment and management of patients with mast cell activation syndrome and Histamine Intolerance

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United Kingdom

Abi Shrapnell, BSc Osteopathic Medicine
Osteopathy in connective tissue disorders, osteopathy in autonomic dysfunction

Practice / Clinic 1:
Newbury Osteopath Abi Shrapnell
Tiverton House Osteopaths
Mill Lane
Newbury, Berkshire RG14 7LE

Practice / Clinic 2:
Wokingham Osteopath Abi Shrapnell
Wokingham Therapy Centre
Denmark Street
Wokingham, Berkshire RG40 2AY

07990589670
abi.shrapnell@gmail.com

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Abi graduated from the Surrey Institute of Osteopathic Medicine in 2016. Having published articles in dysautonomia international and conducting research into the affect of Osteopathy on postural orthostatic tacchcardia Abi offers a range of musculoskeletal treatments to help address the symptoms associated with connective tissue disorders.

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United Kingdom

Roger Wolman, MD (Res) FRCP FFSEM
Rheumatology, Rehabilitation Medicine, Sport and Exercise Medicine
Royal National Orthopaedic Hospital
45 Bolsover Street
Westminster
London, London
W1w 5AQ
https://www.rnoh.nhs.uk/our-services/rheumatology
020 8385 3040
laura.park2@nhs.net

Type of clinic: NHS

This professional is a member of the International Consortium on EDS and Related Disorders.

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Run a weekly clinic where I see patients with joint hypermobility and treat the musculoskeletal and pain-related problems that occur.

Use a multi-disciplinary approach to management working closely with Physiotherapists, Occupational Therapists, Pain Psychologists and Nurses. Have access to both outpatient and inpatient treatment programmes.

Also have access to genetic testing, state-of-the-art imaging and, when rarely required, orthopaedic surgery.

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United Kingdom

Lorna Ryan, MA, mBANT, rCNHC
Nutrition, Nutritional Therapy
Practice 1:
The Groves Medical Centre
171 Clarence Ave,
New Malden, Kingston-upon-Thames KT3 3TX
United Kingdom
http://www.lornaryanhealth.com
07791202443
lorna@lornaryanhealth.com

Practice 2:
Natureworks at Danceworks
16 Balderton Street,
Mayfair, London W1K 6TN

Practice 3:
Virtual via zoom or skype

Type of clinic: Private

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Registered nutritionist/nutritional therapy practitioner working with a functional medicine approach to provide personalised, evidence based management plans to support clients. With a special interest in gastrointestinal health and energy regulation, I am dedicated to an integrative health care approach to help address symptoms associated with hEDS, EDS, and connective tissues disorders. Clinical interests come from a personal experience living with hEDS and I draw on experiences to offer a compassionate and motivating approach for every client.

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USA – Alaska

Nichelle C. Renk, MD
Board-Certified and Fellowship-Trained Interventional Pain Physician
Alpenglow Pain & Wellness
2000 Abbott Road, Unit A2
Anchorage, Alaska 99507
http://www.drnichellerenk.com/
(907) 677-PAIN (7246)
AlpenglowPainAK@gmail.com

Hospital affiliations:

  • Providence
  • Regional

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As an interventional pain physician, Dr. Nichelle Renk believes the most successful treatment involves identifying the appropriate diagnosis and then implementing a combination of modalities truly tailored to her patient. This multidisciplinary approach to pain management includes the potential use of procedures, limited use of medications, physical therapy, braces and devices, pain psychology, complementary alternative medicine (e.g. acupuncture), and nutrition/lifestyle modification. With a precise diagnosis and multifaceted plan, Dr. Renk achieves dramatic long-lasting results for her patients.

Dr. Renk performs advanced procedures head-to-toe but specializes in procedures for the cervical, thoracic, and lumbar spine, sacroiliac joint, and other joints of the body and Botox for chronic migraine headaches. Dr. Renk is especially passionate about identifying and educating patients on hEDS as she has the syndrome herself.

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USA – Arizona

Elissa Gartenberg, DO
Family Medicine, Medical Acupuncture
Modern Family Medicine
7522 E 1st Street
Scottsdale, AZ 85251
http://www.modernfamilymedicine.com
602-363-1631
info@modernfamilymedicine.com

Hospital affiliations:

  • Honor Health

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At Modern Family Medicine, we offer a unique health care setting embracing the Mind, Body, and Spirit. Offering not just diagnoses and prescription medications but alternative treatments such as; Osteopathic Manipulation, Medical Acupuncture, Cupping, Trigger Point injections,Vitamin injections, a “Breathing Bar™”, a meditation atrium, classes and more!

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USA – Arizona

Jenna Lightfoot, PA-C
Family Practice
Summit Medical Group – Estrella
14541 W. Indian School Road
Suite 600
Goodyear, Arizona 85395
http://www.smgarizona.com/location/estrella-internal-medicine-and-pediatrics/
623-535-5599
jlightfoot@smgarizona.com

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Family practice clinic that provides patient care for both adults and pediatrics of all ages. Our staff thoughtfully considers all your health and wellness concerns to care for you as a whole person. This includes treatment for acute illnesses and injuries as well as treatments that promote ongoing wellness. Jenna Lightfoot, PA-C has special interest in using diet and lifestyle to manage and prevent many chronic medical conditions.

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USA – Arizona

David Saperstein, MD
Neurology, Neuromuscular Disorders, Autonomic Disorders
Center for Complex Neurology, EDS & PTS
7054 E. Cochise Road
Suite B230
Scottsdale, AZ 85253
http://www.complexneurology.com/
602-258-3354
drsaperstein@complexneurology.com

Hospital affiliations:

  • Osborn Hospital, Scottsdale, AZ
  • Banner University Medical Center, Phoenix, AZ

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In addition to seeing patients with Neuromuscular disorders I have a focus on EDS and dysautonomia. I currently follow over 400 patients with EDS. I diagnose and manage their EDS, POTS, migraines, TMJ and MCAS. I also work with physical therapists, orthotists, allergists, orthopedists, gastroenterologists, cardiologists, geneticists and dentists knowledgable about EDS and its complications. In my office we can perform autonomic testing, EMG, EEG, and small fiber neuropathy testing.

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USA – Arkansas

Thomas Lowder, PhD
Pulmonary function, immunology, muscle physiology
University of Central Arkansas
201 Donaghey, Farris Center 101
Conway, ARKANSAS 72035
501-450-5713
tlowder@uca.edu

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My research focuses on pulmonary function, women’s health, and immune function in rare diseases. I am investigating sleep as well as the role of exercise in disease as well. I am new to EDS but have a couple of patients I am beginning to work with.

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USA – California

Derik Anderson, DC
functional rehabilitation, chiropractic (low force),
Muscle & Joint Clinic
10 G St.
San Rafael, CA 94901-1720
http://www.MuscleJointClinic.com
415-488-5372
DrAnderson@MuscleJointClinic.com

This professional is a member of the International Consortium on EDS and Related Disorders.

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Muscle & Joint Clinic specializes in Hypermobile Ehler-Danlos Syndrome diagnosis and treatment. We develop indiviualize strengthening and functional rehabiitation programs for patients with hypermobility due to EDS.

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USA – California

George Davis, MD
Orthopedic
Children’s Hospital of Los Angeles
3699 Wilshire Blvd
Suite 850
Los Angeles, CA 90010
https://blog.answering365.com/topic/medical-answering-service
310-854-5090
answering365@gmail.com

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George Davis MD, is a private-practice, Orthopedic Doctor specializing in Regenerative Medicine. This is a non-surgical procedure for pain in the joints which can heals ligaments and tendons.

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USA – California

Catherine Karimov, MD
Clinical genetics, OB/GYN
Children’s Hospital of Los Angeles
4650 Sunset Blvd. #90
Los Angeles, CA 90027
https://www.chla.org/medical-genetics
323-361-2178
ckarimov@chla.usc.edu

Hospital affiliations:

  • Children’s Hospital of Los Angeles
  • Keck Medical Center

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Dr. Karimov provides specialized testing, diagnosis, and counseling for anyone who wishes to obtain information about a medical condition with a known or possible genetic component affecting them or a family member. She is trained in diagnosing inherited diseases, identifying unaffected and affected individuals through specialized testing and examination, determining a person’s chance of developing or passing on a genetic disorder, and managing inherited diseases as it effects someone’s health. She works in close association with the medical team to help guide every aspect of the personalized medical plan and provides education and support.

In addition, Dr. Karimov is interested in all aspects of general obstetrics and gynecology for women with connective tissue disorders, cardiac disorders, metabolic disorders, and cancer predisposition syndromes. She has expertise and interest in fetal anomalies, cardiac defects, and ultrasound for prenatal diagnosis of genetic syndromes.

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USA – California

Harold Kraft, MD
Anesthesiology; Pain Management

Practice / Clinic 1
LaserMD Pain Relief
1821 Wilshire Blvd #300
Santa Monica, CA 90403

Practice / Clinic 2
LaserMD Pain Relief
1200 Rosecrans Blvd
105
Manhattan Beach, CA 90266

http://www.lasermdpainrelief.com/
213-550-5600
hhk@lasermdpainrelief.com

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I am the most experienced MD in USA (and likely globally) with high-dose laser pain treatment. Have recently treated 5 EDS patients with high-dose non-invasive pain laser, and all 5 have responded well beyond their or my expectations. Potentially new treatment modality.

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USA – California

Gloria Tucker, MD
prolotherapy, EDS, hypermobility
250 Bel Marin Keys
Novato, CA 94949
https://gloriatuckermd.com/
415-506-4907
orthomedoffice@gmail.com

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I am a private-practice, Orthopedic Doctor specializing in Prolotherapy/Regenerative Medicine. This is a medical, non-surgical procedure for joint pain which actually heals ligaments and tendons. It is very effective in EDS and Hypermobility issues.

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USA – California

Carmine Van Deven, DO
Family Medicine, Neuromusculoskeletal Medicine
Carmine Van Deven DO, PC
1956 Union Street
San Francisco, CA 94123
http://www.drvandeven.com/
415-921-1446
1956union@gmail.com

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Structure determines function, and vice versa. Thereby, both need to be addressed to create the greatest potential for health and healing.

My practice is a synergistic blend of Osteopathy & Functional Medicine – both aim to identify the cause of disease. Osteopathy applies our understanding of anatomy and physiology into a gentle hands-on treatment. For EDS patients, it is especially helpful in resolving physical strain and pain throughout the body, but is also known to relax the nervous system, improve digestion, lung function, immune function, and much more.

Functional Medicine addresses our unique biology, hormones, digestion, immune function, nutrition, genetics, and lifestyle. All of which help to maximize the benefit from the osteopathic manipulation and provide a full, enjoyable life.

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USA – California

Barbara Bogorad, PsyD
Psychology, Trauma
Dr. B. Bogorad
18600 Main Street
Suite 250
Huntington Beach, CA 92648
United States
7149140409
drbeb@aol.com

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I am a State licensed Psychologist (California and New York) currently in private practice in Huntington Beach, CA. Previously I was the director of a trauma unit on Long Island, New York, where many of my patients were dual diagnosis. Currently, I work with individuals and couples struggling with a variety of psychological and emotional issues, typically with medical complications. An increasing number of my patients with immune system problems are finally being recognized as having connective tissue disorders, most often hEDS. I am looking to be of increasing service to such individuals, providing therapy and hopefully group support.

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USA – California

John Fagan, MD
Family Medicine, Geriatrics
Aspen Family Medicine
10787 Laurel Ave
Rancho Cucamonga, CA 91730
United States
909 982 7741
Admin@aspenfamilymedicine.org

Hospital affiliations:

  • San Antonio Reginal Hospital
  • Casa Colina Hospital

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I am a 58 year old Family Medicine Physician with Certificate of Added Qualification in Geriatrics. I have a 30 year old daughter with Hypermobile EDS (hEDS). I have attended multiple conferences concerning EDS including several in Baltimore (Johns Hopkins). I have over 100 patients with hEDS in my practice and see patients from all over Southern California and the West for hEDS related issues.

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USA – Colorado

Caroline Creager, DPT
Physical Therapy Doctors
247 Mountain Avenue
PO Box 1319
Berthoud, CO 80513
http://www.physicaltherapydoctors.net/
970-532-2533
caroline@carolinecreager.com

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Physical Therapy Practice Specializing in EDS, Intercranial Hypertension, Intercranial Hypotension, Tethered Cord, Chiari, and Pelvic Health.

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USA – Colorado

Alex Lanton, DPT
Physical Therapy
Atlas Physical Therapy
3401 S Quebec St
Denver, CO 80207
303-322-4900
stapletonsupport@atlasptco.com

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Atlas Physical Therapy is a small practice with big heart, our therapists work closely with their exercise specialists to make sure that our patients receive the very best care. We treat all kinds of patients, from post operative repairs to sprained ankles, older individuals to young athletes, whatever it is we can make them feel better.

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USA – Colorado

Allison Rector, MPT, Certified Orthopaedic Manual Therapist, Orthopedic Clinical Specialist
Physical Therapy

Practice / Clinic 1:
ProActive Physical Therapy, LLC
9320 Grand Cordera Parkway
Suite 125
Colorado Springs, CO 80924

Practice / Clinic 2:
ProActive Physical Therapy, LLC
1808 Woodmoor Drive
Suite 130
Monument, CO 80132

https://www.proactiveptco.com/
719-535-2757
proactivept@me.com

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Allison was a gymnast, gymnastics coach and judge. She became a Physical Therapist to help the gymnastics community to understand and treat gymnasts with hyper-mobility related injuries and instabilities. As a Certified Orthopaedic Manual Therapist and Orthopedic Clinical Specialist she treats a variety of athletes and individuals with various types of EDS.

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USA – Colorado

Scott Rezac, PT, DPT, OCS, FAAOMPT, CSCS
Board certified orthopedic specialist, Fellow of the American Academy of Orthopedic Manual Physical Therapists
Rezac & Associates Physical Therapy
855 Citadel dr E
Colorado Springs, CO 80909
http://www.rezacpt.com/
710-465-1502
Scott.rezac@rezacpt.com

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Ambulatory outpatient clinic focusing on a whole body approach to rehabilitation.

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USA – Colorado

Kimberly Saunders, DPT
Physical Therapy
Foothills Orthopedic and Sport Therapy
3938 JFK Parkway
Fort Collins, CO 80525
http://www.foothillstherapy.com/
970-207-1500
kim.saunders@foothillstherapy.com

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We are a small private practice clinic with a focus on individualized one on one care. I have been working with individuals with generalized joint hypermobility/HSD/hEDS since 2003 and focused on this topic while achieving a post-professional doctorate (PP-DPT) completed in 2014. Over half of my caseload is individuals with hypermobile joints, abnormal connective tissue &/or chronic pain and fatigue. I have additional specialty training in peri-partum care and have supported women with GJH/HSD/hEDS through this phase. I experience GJH and meet 2017 criteria for hEDS, so I truly understand the pain and struggle that my patients live each day. My approach is focused on training body awareness and optimal movement strategies (Movement Impairment Syndromes Approach) and empowering individuals to take control of their daily lives. I have developed a style of manual therapy through trial and error that provides temporary symptom relief and augments the home exercise program and movement strategies. I also focus on training self care skills for pain management (TENS, hot/cold, massage, sleep hygiene, etc). I offer no miracles, but promise better management of our very unique bodies.

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USA – Connecticut

Sara Levine, MD, MPH
general pediatrics, adolescent medicine
Greenwich Adolescent Medicine
239 Glenville Rd
Greenwich Adolescent Medicine
Greenwich, CT 06831

203-532-1919
saralevinemd@greenwicham.com

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At Greenwich Adolescent Medicine, we provide primary and specialty care to young people ages 10-26. We take an active role in coordinating the care team in the management of chronic and complex illnesses.

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USA – Connecticut

Eloise Stager, LMT, CST-D
CranioSacral Therapy
CT Center for CranioSacral Therapy
4 Main Street
New Milford, CT 06784
http://www.ctcranio.com
860-367-2926
ctcranio@gmail.com

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The CT Center for CranioSacral Therapy specializes in pain management of physical and/ or emotional origin using gentle manual techniques. Of particular interest are Ehlers-Danlos Syndromes and related connective tissue disorders.

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USA – Denver

Jill Schofield, MD
Internal Medicine; two year training in multi-specialty autoimmune disease
Center For Multisystem Disease
8101 E. Lowry Blvd.
Suite 250
Denver, CO 80230
United States
https://www.centerformultisystemdisease.com/
303-366-6633
admin@centerformultisystemdisease.com

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My practice specializes in evaluating patients with complex, multisystem disease including patients with diagnosed or suspected dysautonomia, autoimmunity and/or mast cell activation syndrome. A significant subset of these patients have hypermobility spectrum disorder or Ehlers-Danlos syndrome. Three hours of face-to-face time is spent for most new patients at the initial evaluation to allow enough time to address all issues and to properly evaluate patients for important comorbidities and underlying causes and to provide proper education about these complex conditions.

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USA – District of Columbia (Washington, DC)

S. Shar Hashemi, MD, FACS
Nerve Bone & Joint Institute DC
3 Washington Circle NW
Suites 207/208
Washington, DC 20037
http://www.nerveboneandjoint.com/
202-955-6001
patients@nerveboneandjoint.com

Hospital affiliations:

  • DCHUX
  • George Washington University Hospital

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Multidisciplinary approach in evaluating patients with EDS and Hypermobility for peripheral nerve conditions.

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USA – District of Columbia (Washington, DC)

Noah Raizman, MD, MFA
Orthopaedic Surgery, Hand Surgery
The Centers for Advanced Orthopaedics
1850 M Street NW
Suite 750
Washington, DC 20036
http://www.dchand.com
202-835-2222
nraizman@cfaortho.com

Hospital affiliations:

  • Sibley Memorial Hospital
  • George Washington University Hospital
  • Georgetown University Hospital

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I am a Fellowship-trained Hand and Upper Extremity Surgeon. I have dozens of patients with EDS and other connective tissue disorders linked to hypermobility. We have on-site hand therapy and physical therapy and coordinate care with our therapists to include bracing, splinting, activity modification and medical/injection therapy as needed. My bias is towards conservative care and working around some of the difficult issues faced by EDS patients by being creative with approaches to functional activities, but perform surgery when necessary, with an understanding that EDS patients need to be rehabbed and treated differently from the general population. I am often in the situation of making the initial diagnosis of EDS in many patients and referring them for a appropriate genetic screening.

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USA – Florida

Paldeep Atwal, MD
Clinical Genetics, Medical Biochemical Genetics, Internal Medicine
The Atwal Clinic
4110 Southpoint Blvd.
Suite 118
Jacksonville, FL 32216
http://www.AtwalClinic.Com
904-364-9985
DrA@AtwalClinic.com

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Managed by Dr. Paldeep S. Atwal, a board-certified geneticist, our standalone genetics institute caters to patients with rare genetic conditions and is committed to improving access to state-of-the-art genomic testing. With the widespread availability of affordable genetic testing laboratories we are able to find more specific and effective ways of managing patients. We are based in Jacksonville, FL and see patients from around the world.

When evaluating patients for a suspected genetic diagnoses we have 5 main objectives for patients and families:

  • Provide a precise diagnosis
  • Answer whether the symptoms are genetic in nature
  • Provide a more accurate natural history & prognosis (i.e. what to expect)
  • Optimize medication and treatment
  • Give an accurate recurrence risk estimate of the condition in other members of the family

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USA – Florida

Irman Forghani, MD, FACMG
Medical Genetics, Internal Medicine

Practice / Clinic 1
University of Miami, Mailman Center, Connective tissue disorder clinic
1601 NW 12th Ave
Miami, Florida 33137

Practice / Clinic 2
University of Miami, The Lennar Foundation Medical Center, Adult Genetic Disorders
5555 Ponce de Leon Blvd

Coral Gables, FL 33146
305-243-6006
medgen@med.miami.edu

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In multidisciplinary hereditary connective tissue disorder we see all categories of connective tissue disorders, with special interest in Ehlers-Danlos Syndromes. We provide diagnosis, counseling and management for the patients and their families. We coordinate a multidisciplinary care for these complex disorders.

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USA – Florida

Ross Hauser, MD
Prolotherapy, Platelet Rich Plasma, Stem Cell Therapy, Nerve Release and Regeneration Injection Therapy, Digital Motion X-ray, Cervical Realignment Therapy,
Caring Medical Regenerative Medicine Clinics
9738 Commerce Center Ct

Fort Myers, FL 33908
https://www.caringmedical.com/

239-303-4069
drhauser@caringmedical.com

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Ross Hauser, MD is a Board Certified Physical Medicine and Rehabilitation physician who has diagnosed and helped patients with joint hypermobility and hypermobility EDS since 1993. He is most well-known for his work developing comprehensive treatment protocols using Prolotherapy (including PRP and Stem Cell therapy) to alleviate pain and improve joint function patients suffering from EDS and severe joint and spinal instability. These Regenerative Injection Treatments help treat chronic pain and joint instability due to ligament laxity. Dr. Hauser also specializes in cervical spine instability cases, pioneering the combined use of Digital Motion X-ray (DMX), Prolotherapy, and cervical weight and bracing protocols to help restore stability of the neck and eliminate cervical instability-related symptoms such as vertigo, migraines, and drop attacks. Caring Medical treats some of the world’s toughest pain cases, seeing patients from all 50 states and internationally. Our motto is “Hope Practiced Here” because we see lives restored when the underlying joint instability is corrected. We believe the goal of EDS treatment should not just be pain “management,” it should be pain “resolution.”

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USA – Florida

Marlon Pereira, DPT
PT, DPT
University of Miami, UHealth Tower
1400 NW 12th Avenue
Suite 1301
Miami, FL 33136
http://pt.med.miami.edu/clinical
305-689-5635
mpereira@med.miami.edu

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Orthopedic and Sports setting; Out-patient physical therapy

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USA – Florida

Marcia Perretto, PT, DPT, COMT
Ehlers-Danlos Syndrome, Shouders Pelvis, hips and spine disorders, orthopedics
Actify PT, LLC
7000 West Palmetto Park Road
Suite 210
Boca Raton, FL 33433
http://actifypt.com
561-366-2435
info@actifypt.com

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The name ACTIFY developed out of our passion for wellness of both the body and the mind. The activation of our minds is essential to the success of our physical health. In rehabilitation of the body, neuroplasticity allows our brains to create new positive and powerful neural connections to override painful, ineffective and self-limiting habits and movement patterns. Neurons that fire together, wire together. So, if we focus on new efficient and effective functional movement patterns, we will build stronger, positive neural pathways. We can re-educate your nervous system through a hands on approach that creates uniquely chosen therapeutic activities for you. From restoring your posture to re-creating functional and pain-free movement patterns, when we activate the connection between body and mind, you get better quicker.

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USA – Florida

Frederick Stahlman, PT, CST-D (CranioSacral Therapy Diplomate Certification)
Physical Therapy, CranioSacral Therapy (CST-D)
The Upledger Institute International Clinic
11211 Prosperity Farms Rd
D 223
Palm Beach Gardens, FL 33410
http://www.theupledgerinstituteclinic.com
239-398-3154
fstahlman@yahoo.com

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The Upledger Institute International Clinic is a facility that is dedicated to providing the best treatment available to clients with a variety of disorders/disabilities utilizing CranioSacral Therapy, physical therapy, acupuncture, Osteopathy, Chiropractic treatment , counseling and therapeutic massage. We are dedicated to treating the entire person to reduce and or eliminate the presenting symptoms, and enhancing the client’s quality of life.

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USA – Georgia

Melissa Dickinson, LPC
Behavioral Health, Mental Health, Counseling, Psychotherapy, Psychology
Wellspring Counseling Intown
321 W Hill Street, Suite 2D
Decatur, GA 30030
http://www.melissadickinson.com
404-969-5139
melissadickinsonlpc@gmail.com


USA – Georgia

Fran Kendall, M.D.
Clinical Biochemical Genetics
VMP Genetics
5779 Chamblee Dunwoody Rd
Ste 110
Atlanta, GA 30338
http://www.vmpgenetics.com
404-793-7800
info@vmpgenetics.com

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Extensive experience with connective tissue disorders because of the overlap with my primary expertise in mitochondrial and metabolic disorders. Very accustomed to cases with multisystem involvement and approaching each patient as an individual requiring personalized symptomatic management across a wide range of issues. In the Professional Background section below, thought that where and what Fellowship is important to a medical doctors history which in my case is: Fellow in Genetics and Metabolism, Children’s Hospital and Harvard Medical School.

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USA – Hawaii

Katie Vitousek, DPT
physical therapy, women’s health, lymphadema
Practice / Clinic 1
Club Rehab Inc
79-7422 Mamalahoa Hwy
Kealakekua, HI 96750
http://www.clubrehabhawaii.com

Practice / Clinic 2
Club Rehab Inc
75-5699 Kopiko Street

Kailua-Kona, HI 96740
http://www.clubrehabhawaii.com
808-322-8400
kvitousek@clubrehabhawaii.com

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Club Rehab has been serving the Island of Hawaii since 1994. Our mission is to bring motion back to life! Our Kailua office is housed in “The Club in Kona” which is a 20,000 square foot, fully equipped health club which includes a outdoor/indoor olympic sized pool. Our second facility, located in Kainaliu, is a 4000 square foot fitness facility and clinic that serves our Mauka community. Each of these facilities is equipped with state of the art Erchonia cold lasers, Pilates equipment, and a full compliment of exercise equipment and physical therapy modalities. For our fitness clients, personal trainers are available to help you achieve your fitness goals

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USA – Illinois

Catherine Lewan, PT, DPT, C-IAYT
hypermobility/EDS, dysautonomia/POTS, pelvic floor dysfunction
Chicago Physical Therapists
3717 N Ravenswood
Chicago, IL 60640
http://www.catherinelewan.com/
(773) 770-3682
dr.cat@catherinelewan.com

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I am self-employed at a private practice that prioritizes expert, patient-focused and individualized care. I love my work and I’m grateful for the opportunity to help others who have EDS. Since I have hEDS, so you may notice I use thumb splints for performing manual therapy and I tend to get up quite slowly as I also have POTS. I have a lot of personal and professional experience using therapeutic exercise and manual therapy to improve chronic pain, fatigue, dizziness, joint stability, and quality of life. It often takes a village, so I enjoy helping my patients connect to other team members that can assist them in their journey. I love learning with my patients about what works best for them in getting them closer to their goals– because everyone is unique. Especially when you are a zebra.

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USA – Illinois

Michelle “Rhea” Satterly, ARNP
Family medicine, connective tissue disorders, Ehlers Danlos syndrome, osteogenesis imperfecta, autoimmune disorders, psychology, immunology, pediatrics
Rock Island Family Medicine
2560 24th Street
Suite 102
ROCK ISLAND, IL 61201
https://www.unitypoint.org/
309-779-4150
michelle.satterly@unitypoint.org

Hospital affiliation:

  • UnityPoint Hospital

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Rock Island Family Medicine is located in Rock Island, IL. We have 4 providers here (2 medical doctors and 2 nurse practitioners).

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USA – Illinois

Wendy Wagner, PT,MPT
Pediatric PT and EDS PT
Wendy4Therapy
3340 Empress Dr.,
Naperville,
IL 60564
http://www.wendy4therapy@gmail.com/
630-664-8513
wendy4therapy@gmail.com

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I am a PT and I have EDS myself. I have been a pediatric PT most of my career but am in the process of transitioning to only accepting patients with EDS. I am in the western suburbs of Chicago and will also be offering telehealth services soon for patients who do not feel well enough to travel. I am uniquely qualified to treat patients with EDS as I struggle with the same issues of pain, fatigue and loss of functional activity as my patients. I have the approval of Kevin Muldowney to execute his protocol and have worked with Susan Chalela (PT in Charleston) to learn tried and true techniques.

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USA – Iowa

Danielle Brachman, DPT, OCS, FAAOMPT
Orthopedics
Physical Therapy Solutions
107 S. 11th St.
Suite 1
Manchester, IA 52057
https://www.ptsiowa.com/
563-927-1499
danielleb@ptsiowa.com

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Danielle was raised in Dubuque and graduated from Wahlert High School. She received her Bachelor’s of Science Degree in Exercise Science with a minor in Biology from St. Ambrose in 2011. She went on to complete her Doctorate of Physical Therapy in 2012.

After graduation, she was employed in Denver, CO for 6 years, improving her skills in outpatient orthopedics. During this time, she earned the designation as a Board Certified Orthopedic Specialist (OCS). She then spent several years studying at Regis University in Denver, completing her Fellowship in Orthopedic Manual Physical Therapy (FAAOMPT) in 2018. She obtained her Level 2 Dry Needling Certificate through Kinetacore in 2015.

Danielle greatly enjoys being a Physical Therapist and the lasting relationships she creates with patients. She strongly believes in empowering patients through education. She treats all ages, from pediatrics through geriatrics, and enjoys returning patients to the activities they love.

When not in the clinic, Danielle enjoys spending time with her husband and son, as well as hiking, biking, and camping.

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USA – Kansas

Vernon Rowe, MD
Neurology, Sleep Medicine, Neuroimaging, Electrodiagnostic Medicine
Rowe Neurology Institute
8550 Marshall Dr ste 100
Lenexa, Kansas 66214
https://www.neurokc.com/
913 827 4200
jhunter@neurokc.com

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Our practice is a specialty neurology practice focusing on hypermobility, EDS, and POTS, Sleep Medicine, Headache, Multiple Sclerosis, Back and Neck Pain, and Memory Loss and Dementia. When patients come for a particular symptom we perform a comprehensive evaluation of the whole patient. This approach has enabled us to evaluate and treat patients with the constellation of symptoms that are EDS Hypermobility Type. Since we discovered the strong correlations of headache, sleep disorders, cervical radiculopathy , and joint pain, as well as the autoimmune correlations, we have treated over 600 hypermobile patients, and have presented multiple posters on their evaluation and treatment, particularly the evaluation and treatment of their headache and sleep disorders.

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USA – Kentucky

Elaine DeSario, OD, Diplomate, ABO
Optometry
Louisa Eye Care
112 South Vinson Ave.
Louisa, KY 41230
https://www.louisaeye.com/
606-638-4731
Louisaeyes@gmail.com

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Drs. DeSario and Bowling provide comprehenive eye care for the entire family. They diagnose and treat eye disease, perform contact lens fittings, and co-manage surgical cases with other local physicians. An optical boutique with a large frame assortment is also on-site for glasses prescriptions.

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USA – Maryland

Michael April, MD
PM&R
Pain and Injury Center of Greater Washington
6000 Executive Blvd.
#602
Rockville, MD 20852
http://www.end-suffering.com/
301-770-6301
frontdesk@gwpaincenter.com

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Outpatient clinic that specializes in acute and chronic pain and sports medicine. Currently 5-10% of the practice is patients with EDS. Work closely with Jan Dommerholt, who is well known in field. Utilize multimodal approach with medications, injections, acupuncture, PT, chiropractic, nutrition, and mind-body medicine. Clinic has M.D, nurse practitioner, chiropractor, nutritionist, and social worker.

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USA – Maryland

Alreen Day Alfonso, PT, DPT, CIMT, OCS, CMTPT, CKTP, Cert DN
Physical Therapy, Dry Needling
Beat Physical Therapy
5840 Banneker Rd,
Suite 230
Columbia, MD 21044
https://www.ibeatrehab.com/
410-884-0000
help@ibeatrehab.com

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We are a private practice physical therapy practice located at the heart of Columbia, MD who caters to orthopedic, sports, and geriatric population. Our Staff does extensive manual therapy, Trigger Point Dry Needling, in addition to traditional Physical Therapy. Our highly trained and experienced Orthopedic Certified Specialists Physical Therapist has profound expertise in treating patients of all ages and physical ailments. BEAT Physical Therapy is committed to helping you achieve and maintain optimal joint, bone, and muscle movement in a timely manner.

Our therapists are trained to deal with simple to complex conditions including hypermobility syndrome, EDS, chronic pain, fibromyalgia and other orthopedic pre and post-surgical cases.

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USA – Maryland

Claudiu Austin, MD, MPH
Doctors Community Hospital
1010 Wayne Ave
Suite 420
Silver Spring, MD 20910
240-499-4191, fax 999-511-6783
dr.austin@yahoo.com

Hospital affiliations:

  • Washington Adventist Hospital
  • Shady Grove Adventist Hospital
  • Sinai Hospital Baltimore

This professional is a member of the International Consortium on EDS and Related Disorders.

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Dr. Austin has been practicing internal medicine and hospitalist medicine, successfully combining the European and American approach to the most challenging EDS and Chiari patients.

Dr. Austin acquired a vast expertise in treating Ehlers-Danlos Syndrome patients, movement disorders, adult PANDAS, mast cell activation disease and severe autonomic dysfunction.

His previous interest in pharmacology, physiology, headache, autoimmunity, psychotropic and nootropic medication alowed him to design new algorithms of treatment in the intricated world of multi-system involvement of EDS, and apply them clinically with outstanding results.

His unusual knowledge of side effects and medication interactions, combined with a solid base of history of medicine and medical research made him a great addition to the EDS group in the Washington area.

Dr. Austin published on sepsis, pharmacology, EDS, and lectured in EDS, dystonia and PANDAS

He is Diplomate of the American Board of Internal Medicine, member of American Medical Association and American Society for Plasmapheresis

Dr. Austin was named America’s Top Physician in Internal Medicine in 2012 and 2013.

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USA – Maryland

Jennifer Balducci, PT, MSPT, Cert MDT
Orthopedics
914 Bay Ridge Road
Suite 212
Annapolis, MD 21403
http://www.oneptfw.com

410-280-0914
one.ptwf@gmail.com

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One. is a physical therapist owned and operated wellness clinic in Annapolis, MD.
Jennifer Balducci, PT, MSPT, co-owner of One., herself with joint hypermobility syndrome, has dedicated her practice to the treatment of joint hypermobility, with a focus on Wellness, using a combination of educational, nutritional, self treatment, Class IV Cold Laser, manual therapy, and Pilates based approaches to give her clients the opporunity to manage their hypermobility and related pain disorders.

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USA – Maryland

Jan Dommerholt, PT, DPT, DAIPM
Physical Therapy

Practice / Clinic 1
Bethesda Physiocare
4405 East West Highway
Suite 403
Bethesda, MD
20814-4535
http://www.bethesdaphysiocare.com

Practice / Clinic 2
PhysioFitness
11140 Rockville Pike
Suite 303
Rockville, MD 20852
http://www.physiofitnesspt.com

301-656-5613
info@bpcemail.com

This professional is a member of the International Consortium on EDS and Related Disorders.

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We see many patients with EDS related disorders in both clinic locations. The PhysioFitness location is truly unique as we have a revolutionary new approach to exercise for individuals with EDS emphasizing an external-focus exergaming focus. We collaborate with several prominent EDS medical specialists in the greater Baltimore-Washington DC metropolitan area. Our clinicians are highly specialized in EDS and related disorders and can address most common pain issues, including headaches, neck/back pain, movement disorders, etc.

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USA – Maryland

Michelle Finnegan, PT
Physical therapy
Bethesda Physiocare
4405 East West Hwy
Suite 403
Bethesda, MD 20850
http://www.bethesdaphysiocare.com
301-656-5613
finnegan@bpcemail.com

This professional is a member of the International Consortium on EDS and Related Disorders.

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The clinic specializes in treating patients with chronic pain, including those with EDS, orofacial pain, and myofascial pain.

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USA – Maryland

Clair Francomano, MD
Medical Genetics
Ehlers-Danlos Society Center for Clinical Care and Research
Harvey Institute for Human Genetics, Greater Baltimore Medical Center
6701 N. Charles St. Suite 2326
Towson, MD 21204
https://www.gbmc.org/adult-genetics

443-849-3131
clinicalgenetics@gbmc.org

This professional is a member of the International Consortium on EDS and Related Disorders.

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The Ehlers-Danlos Society Center for Clinical Care and Research is dedicated to providing diagnostic services and care of persons with the Ehlers-Danlos Syndromes.

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USA – Maryland

S. Shar Hashemi, MD, FACS
Nerve Bone & Joint Institute Maryland
7500 Greenway Center Drive
Suite 520
Greenbelt, MD 20770
http://www.nerveboneandjoint.com/
301-220-2127
patients@nerveboneandjoint.com

Hospital affiliations:

  • DCHUX
  • George Washington University Hospital

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Multidisciplinary approach in evaluating patients with EDS and Hypermobility for peripheral nerve conditions.

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USA – Maryland

Fraser Henderson, MD
Specializing in craniocervical (CCI) , atlantoaxial (AAI) and spinal instability, occult tethered cord and Chiari malformation
The Metropolitan Neurosurgery Group
1010 Wayne Avenue
Suite 420
Silver Spring, MD 20910
http://www.metroneurogroup.org
301-557-9049
tteriniti@metroneurogroup.com

Hospital affiliations:

  • DOCTORS COMMUNITY HOSPITAL
  • HOLY CROSS HOSPITAL
  • GREATER BALTIMORE MEDICAL CENTER

This professional is a member of the International Consortium on EDS and Related Disorders.

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Our practice is dedicated to providing patients with the highest quality spine and neurosurgical care, offering patients non-surgical and surgical options for treatment. When surgery is indicated, we provide the most advanced, highest quality care available.

We take great pride in the individual care and genuine concern that we show each patient. Although brain and spinal abnormalities are very complex, we strive to build relationships with our patients as we determine the correct diagnosis and treatment options.

Whether you are a current patient, prospective patient, or concerned family member, please explore the information on this web site and feel free to either contact our office for more information or schedule an appointment.

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USA – Maryland

Nathan Mayberry, PT, DPT, CMTPT
Physical Therapy
PhysioFitness
11140 Rockville Pike Ste 303
Rockville, MD 20852-3148
http://physiofitnesspt.com/
301-231-9300
mayberry@physiofitnesspt.com

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PhysioFitness is truly unique as we have a revolutionary new approach to exercise for individuals with EDS emphasizing an external-focus exergaming focus. We collaborate with several prominent EDS medical specialists in the greater Baltimore-Washington DC metropolitan area. Our unique approach towards exercise and dedication to interdisciplinary care is paramount for out patients success.

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USA – Maryland

Eric Singman, MD PhD
Neuro-ophthalmology
Wilmer General Eye Services @ Johns Hopkins Hospital
General Eye Services Division, Wilmer B-29
600 N. Wolfe St.
Baltimore, MD 21287
https://www.hopkinsmedicine.org/profiles/results/directory/profile/3740277/eric-singman
410-955-5080
esingma1@jhmi.edu

Hospital affiliations:

  • Johns Hopkins Hospital

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I host the Vision after Brain Injury Clinic at the Wilmer Eye Institute. In that capacity, I see many patients with Ehlers Danlos Syndrome because it appears that these patients are more susceptible lasting effects of brain injury by virtue of the fact that they are more fragile.

Starting July 2018, we will also develop a vision clinic specifically devoted to patients with EDS and similar diseases. This clinic will be hosted by myself and Dr. Jefferson Doyle, a pediatric ophthalmologist who also has a PhD in the study of Marfan’s Disease.

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USA – Maryland

Anne Wellington-Goldsmith, PT, MPT
Physical therapy
Arthritis and Rehabilitation Therapy Services / Arthritis and Rheumatism Associates, P.C.
2730 University Boulevard West
Suite 714
Wheaton, MD 20906
http://www.arapc.com/
301-942-2520
awellington@arapc.com

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I am the Executive Director of Rehabilitation for Arthritis and Rehabilitation Therapy Services (A.R.T.S.) which is a subdivision of Arthritis and Rheumatism Associates, P.C. We have six offices in Montgomery County, Washington D.C. and Frederick. We have 22 physicians, 14 physical therapists and one physical therapist assistant. Because A.R.T.S. is associated with a rheumatology practice, we get a lot of patients that have joint hypermobility and EDS. As a result, I have developed a comprehensive program for managing this, and have had great success with patients, and teaching them how to best manage their condition!

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USA – Maryland

Russell Rothenberg, MD
Rheumatology
Russell Rothenberg, MD, Chtd.
10215 Fernwood Road, Suite 401
Bethesda, MD 20817
United States
http://www.russellrothenbergmd.com/
301-571-CARE (2273)
Dr.R@RussellRothenbergMD.com

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My medical practice focuses on Primary Care Rheumatology and Internal Medicine and Rheumatology Consultations. I have a special interest in patients with Fibromyalgia Syndrome and musculoskeletal pain, Ehlers Danlos Syndrome and difficult to diagnose and treat Rheumatology and Internal Medicine patients. My practice approach offers comprehensive, patient friendly medical practice services. I really enjoy treating my patients with an emphasis on optimizing their health; which to me means minimizing disease and helping them reach their personal goals in life. I focus on preventive care to keep patients as healthy as possible. I strive to give each patient the time and attention needed to assess and understand their medical issues, answer questions and determine a treatment plan that is individualized for them. I’m not afraid of difficult cases. I enjoy the challenges of complicated and difficult to diagnose medical cases. I like taking the pieces of your medical puzzle and making sense of it. I love what I do and I really enjoy my patients. Most of my patients have been with me for many years. I try to be available to my patients and to empower them to be part of the medical team.

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USA – Maryland

JR Bucklin, PT, CF-L1
Physical Therapy
Cornerstone Physical Therapy
5300 Westview Drive Suite 108
Frederick, Maryland 21703
United States
http://www.cornerstonept.net/
301-732-4754
info@cornerstonept.net

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Outpatient Physical Therapy designed to treat the whole person via the use of osteopathic based manual therapies and functional exercise/re-training.

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USA – Massachusetts

Laura Kragie, MD
Translational Medicine
EndoHealth MD
464 COMMON ST #125
BELMONT, MA 02478
http://www.laurakragiemd.com/
(978) 806-4053
endohealth@gmail.com

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Dr. Kragie is trained in multiple specialities. In addition to Internal Medicine, she knows Endocrinology, Neuroscience, Cardiology, Nephrology, Immunology, Molecular Medicine/Genetics, Clinical Pharmacology and Addiction Medicine. She is adept and current with the cutting edge of medicine, usually 10-20 years ahead of the standard of practice.

At this time (it may change in the future), she is only providing telemedicine remote patient consultations via Skype or Google Hangout. She will not give out prescriptions but will recommend medications and therapies that can be shared with the patient’s healthcare team. Most important, all information is strictly confidential – nothing is shared with corporations or government agencies. The patient has full control over who sees their data and reports and to whom Dr. Kragie may discuss the patient’s care.

“I dedicated my life to learning, teaching and researching medicine. My path has been unique, winding through laboratories as well as clinics and wards. Nowadays, I am called a “Translational Medicine” doctor because I ‘translate’ new discoveries in order to bring them to the patient’s bedside.”

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USA – Massachusetts

Jeff Milunsky, MD
Clinical Genetics, Molecular Genetics
Center for Human Genetics
840 Memorial Drive
Suite 101
Cambridge, MA 02139
http://www.chginc.org
617-492-5106
jmilunsky@chginc.org

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Dr. Jeff Milunsky specializes in the evaluation, diagnosis, and management of genetic connective tissue disorders including EDS. He evaluates patients of all ages. He is also an expert in genetic testing variant interpretation. A summary of the evaluation along with management recommendations are provided to the referring provider with a copy to each patient.

When contacting the clinic, always ask to be placed on the cancellation list.
All major insurance is accepted.

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USA – Minnesota

Shanda Dorff, MD
Family Medicine
Complex Cares, LLC
10417 Excelsior Blvd
Ste 3
Hopkins, MN 55343
http://www.ComplexCaresMN.com
651-756-9596
Info@ComplexCaresMN.com

This professional is a member of the International Consortium on EDS and Related Disorders.

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I offer many cares and evaluations remotely via telemedicine and may do house calls if needed for patients not able to travel/visit the clinic. I perform initial evaluations, provide long term cares and management of EDS as well as other associated conditions (including but not limited to mast cell diseases, dysautonomia, POTS, SIBO, etc). I opened my own practice after discovering the limited availability/access to cares for these conditions which I have adored learning and working with for many years. I especially love the complexity and challenge followed by seeing the great transformation in patients when able to get things under control.

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USA – Minnesota

Kathleen Hopkins, DO
Board certified in Family Practice, Certified Functional Medicine Practitioner
Minnesota Personalized Medicine
1409 Willow Street # 501
Minneapolis, MN 55403
http://mnpersonalizedmedicine.com/
612-345-5029
drkathopkins@gmail.com

This professional is a member of the International Consortium on EDS and Related Disorders.

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Please see website for details. I have a significant portion of my patient population that suffers from the triad of POTS, EDS and MCAS.

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USA – Minnesota

Susan Sencer, MD
Hematology, Oncology, POTS, Hypermobility
Cancer and Blood Disorders Program, Children’s Minnesota
2530 Chicago Ave S
Minneapolis, MN 55404
http://www.childrensmn.org
612-813-5940
susan.sencer@childrensmn.org

Hospital affiliations:

  • Children’s Minnesota

This professional is a member of the International Consortium on EDS and Related Disorders.

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I am primarily an oncologist and hematologist so care for individuals with EDS because of the increased bleeding issues. I became more invested and engaged in the field when my child developed POTS, which I learned was related to his hyper mobility.

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USA – Minnesota

Anna McConville, PT, DPT, PNE, CSTHTTP
Physical Therapy
Replenish Wellbeing
4014 Russell Ave N
Minneapolis, MN 55412
United States
http://www.replenishrestore.com/
6128450707
anna@replenishrestore.com

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Anna McConville PT, DPT, CS, PNE owns a small Wellness Clinic specializing in Chronic Pain, Ehlers Danlos and stress related conditions. Anna, who has Ehlers Danlos herself, has out necessity, discovered options that have enhanced her life and minimized pain. She is certified in Craniosacral and Viseral therapy, Pilates, Heartmath, Pain Neuroscience and Movement Therapies. She’s combines one to one visits with tele-health care for those that aren’t able to come to clinic and offers shared group visits in person or online to decrease costs and provide the benefits of group learning. She utilizes The Muldowney method for care as well as specific programs that uniquely benefit each client.

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USA – New Jersey

Richard Anderson, MD
Neurological Surgery

Practice / Clinic 1
Department of Neurosurgery, Columbia University
710 West 168th Street
New York, NY 10032
http://www.columbianeurosurgery.org

Practice / Clinic 2
Neurosurgeons of New Jersey
1200 East Ridgewood Ave
2nd floor
Ridgewood, NJ 07450
http://www.neurosurgeonsofnewjersey.org

212-305-0219
rca24@columbia.edu

Hospital affiliations:

  • New York Presbyterian Hospital, Columbia University
  • Morgan Stanley Children’s Hospital of New York
  • St. Joseph’s Children’s Hospital

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Dr. Richard C.E. Anderson is one of the leading pediatric neurosurgeons in the tri-state region. He specializes in the surgical treatment of pediatric brain and spinal tumors, complex spinal disorders (including tethered spinal cords, scoliosis, and instability), spasticity, craniosynostosis, Chiari I malformation, vascular disorders (including arteriovenous malformations, cavernous malformations, and Moyamoya disease), hydrocephalus, and general pediatric neurosurgery. Dr. Anderson extensively tests and utilizes the latest proven techniques in pediatric neurosurgery, including computer-guided surgical navigation, minimally invasive endoscopy, and microsurgery. Dr. Anderson’s clinical research efforts focus on surgical techniques and biomechanics of the pediatric cervical spine. He has published over 150 neurosurgical papers and book chapters for the Journal of Neurosurgery: Pediatrics, Neurosurgery, Clinical Immunology, the Journal of Immunology, PLOS ONE, BMC Cancer, and others. He participates actively in organized pediatric neurosurgery efforts and is currently on the executive committee of the AANS/CNS Joint Section on Pediatric Neurosurgery.

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USA – New Jersey

Meghan Mizrachi, DPT
Physical Therapy
Zion Physical Therapy
525 Washington Boulevard
2nd Floor
Jersey City, NJ 07302
http://www.zionpt.com/
203-494-2747
meghan@zionpt.com

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We offer one on one PT session for an hour. We follow the Muldowney protocol. Presently, about 50% of my clients have hypermobile EDS.

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USA – New Jersey

Bonnie Nasar, RD
Nutrition, Dietetics, EDS, POTS, Mast Cell Diseases
Nasar Nutrition
301 Professional View Drive
Freehold, NJ 07728
https://nasarnutrition.com
732-481-2632
NasarNutrition@gmail.com

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I am a registered dietitian nutritionist with a private practice specializing in EDS, POTS, and Mast Cell Diseases. I have a local office in NJ and also accommodate out of state patients via a HIPAA compliant online platform.

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USA – New Jersey

Andrew Sharobeem, DO
Rheumatology
Arthritis & Osteoporosis Associates
4247 US 9N
Bldg 1
Freehold, NJ 07728
http://www.aoadoctors.com
732-780-7650
Drasharobeem@aoadoctors.com

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Single specialty private group (Rheumatology) consisting of 4 Rheumatologists, 2 NPs and 1 PA. Handle and care for a wide variety of arthritic and rheumatic illnesses as well as osteoporosis, chronic pain syndromes and dysautonomia.

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USA – New Jersey

Bao Chau Tran, MD
Anesthesia, Pain, Functional Medicine, Regenerative Medicine, Anti-Aging, BHRT

Clinic 1
BCT Medical Associates
285 Durham Ave
SUITE 1A Bld 6
South Plainfield, New Jersey 07080
United States

Clinic 2
BCT Medical Associates
195 US Hwy 46 W
Ste 14 2nd Fl
Totowa, New Jersey 07511
United States

http://www.bctmedical.com/
7323380228
btran@bctmedical.com

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At BCT Medical, our patients get access to the latest in evolution of comprehensive and integrative concierge pain and functional medicine solutions. We can infuse your pain care with personalized wellness, anti-aging, and performance programs where we teach you to take control of your health and fine tune your physiology.
We have been successful also in treating EDS patients because of the muli-modal pain approach and the individual wellness programs we build for each patient. We will guide you through our concierge pain and perioperative services where we address your questions and concerns about your pain procedure, anesthesia, and post operative needs. On complex pain cases, we co-consult with other specialties so patients get a multispecialty, multi physician, combined and enhanced technique solutions to address pain in many areas of the body.

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USA – New York

Lawrence Afrin, MD
Hematology, Oncology, Mast Cell Disease
Armonk Integrative Medicine
99 Business Park Drive
Armonk, NY 10504
914-730-7390
info@armonkmed.com

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My practice focuses principally in diagnosis and treatment of mast cell activation disease.

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USA – New York

Scott Bienenfeld, MD
Psychiatry, Addiction Medicine
The Recovery Spot
67 Irving Place
FL2
New York, NY 10003
http://www.recoveryspotny.com
917-446-6829
drscottb@recoveryspotny.com

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Our practice at The Recovery Spot is dedicated to treating patient dealing with psychiatric issues, addiction and chronic pain/medical problems. We provide a comprehensive approach to each patient and offer compassionate, state-of-the-art care.

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USA – New York

Svetlana Blitshteyn, MD
Neurology, Autonomic Disorders, Headache, Neuropathy
Dysautonomia Clinic and Amherst Neurology
PO Box 441
Getzville, NY 14068
http://dysautonomiaclinic.com
716-531-4598
admin@amherstneurology.com

This professional is a member of the International Consortium on EDS and Related Disorders.

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Dysautonomia Clinic, founded by Dr. Svetlana Blitshteyn, offers comprehensive patient care to patients with POTS, NCS, OH, neuropathy, chronic headache, chronic fatigue syndrome, fibromyalgia and other related conditions to patients world-wide. We have a large patient population with Ehlers-Danlos Syndrome. We offer phone and video consultations to patients, as well as opportunities to participate in research studies, psychotherapy, nutrition consulting, health and wellness coaching and medical legal consulting services.

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USA – New York

Paolo Bolognese, MD
(516) 321-2586
Chiari and EDS Neurosurgical Center
1991 Marcus Avenue
Suite 108
Lake Success, NY 11042
http://www.chiarinsc.com/index.php
pbolognese@nspc.com

Hospital affiliations:

  • South Nassau Communities Hospital

This professional is a member of the International Consortium on EDS and Related Disorders.

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Our Physicians are Dr. Kula and Dr. Bolognese.
Along with Dr. Milhorat (now retired), we were the first Neuro specialists in the world identifying and treating Craniocervical Instability in EDS patients, more than 15 years ago.
We have performed almost 800 Craniocervical Fusions since then, more than 250 of which with the new Condylar Fixation technique..

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USA – New York

George Cheriyan, DO
Neuromusculoskeletal Medicine, Osteopathic Manipulative Medicine
New York Osteopathic Medicine
1044 Franklin Avenue
Suite 214
Garden City, NY 11530
http://www.nyosteopathicmedicine.com
516-877-1111
drcheriyan@nyosteopathicmedicine.com

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Dr. Cheriyan is a specialist in Neuromusculoskeletal Medicine and Osteopathic Manipulative Medicine. It’s a gentle approach to diagnose and treat somatic dysfunctions. These are impaired or altered function of related components of the somatic (body’s framework) system including: the skeletal, arthrodial, and myofascial structures, and their related vascular, lymphatic, and neural elements. The goal of our office is to optimize your health. We use gentle osteopathic manipulative medicine to give you relief and setup your body to heal itself. Furthermore, we review your lifestyle, diet, posture, exercise routines, medical history and more.

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USA – New York

Jenna Cangiano, DPT
Orthopedic and neuromuscular conditions
I Heart Physical Therapy
131 West 33rd Street
14th Floor
New York, New York 10001
http://www.iheartpt.co/
212-695-0044
drjcangiano@gmail.com

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We work to help patients reduce pain and improve or restore mobility – in many cases without expensive surgery and often reducing the need for long-term use of prescription medications. We teach patients how to prevent or manage their condition so that they will achieve long-term health benefits. We examine each individual and develop a plan, using treatment techniques to promote the ability to move, reduce pain, restore function, and prevent disability. Our focus is to work with individuals to prevent the loss of mobility before it occurs by developing fitness- and wellness-oriented programs for healthier and more active lifestyles.

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USA – New York

Suhadee (Su) Henriquez, LCSW
Cognitive Behavioral Therapy (CBT), Dialectical Behavioral Therapy (DBT), Prolonged Exposure (PE), Acceptance and Commitment Therapy (ACT)
Practice / Clinic 1
Multicultural CBT-DBT LLC/ The Flying Psychotherapist
67 Irving Place 2nd Floor
New York, NY 10003
http://www.multiculturalcbt.com
774-722-8328
theflyingpsychotherapist@gmail.com

Type of clinic: Private

This professional is a member of the International Consortium on EDS and Related Disorders.

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Bilingual multi-state Licensed Clinical Social Worker/ Psychotherapist and Airline Flight Attendant with over 23 years of global flying experience encountering and interacting with a large diversity of cultures and populations. I also have EDS and I am specialized in helping individuals with fear of flying, Chronic pain and EDS, anxiety disorders, mood disorders, and personality disorders, including Borderline Personality Disorder (BPD).In addition, she has extensive expertise in helping those struggling with relationship difficulties, perfectionism, procrastination, chronic pain, disordered eating, substance abuse, hospice end of life of humans and pets, and suicidal and non-suicidal self-injurious behaviors. She has vast experience in working with individuals from a multicultural background as well as the lesbian, gay, bisexual, and transgender (LGBT) community.

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USA – New York

Anne Maitland, MD, PhD
Allergy, Immunology
Comprehensive Allergy & Asthma Care
200 South Broadway Ste 200

Tarrytown, NY 10709
http://www.drannemaitland.net/

914-631-3283
anne.maitland@mssm.edu

Hospital affiliations:

  • Icahn School of Medicine at Mt. Sinai

This professional is a member of the International Consortium on EDS and Related Disorders.

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I have a private practice, Comprehensive Allergy & Asthma Care, which focuses on a more holistic diagnostic and therapeutic approach to inflammation, due to hypersensitivity, such as Mast Cell Activation disorders, as well as Primary Immune Deficiency. Dysregulation of the immune system can cause problems in any organ system. Yet it is signs and symptoms of the skin, gut and respiratory tract that typically cause patients to seek an allergy/immunology consultation: sinus problems, recurrent respiratory infections, skin disorders (urticaria/hives; swelling/angioedema; flushing/redness of the skin; and eczema), breathing difficulties (asthma, ie), food sensitivities/chronic gastro-intestinal distress. The team includes myself, a nurse practitioner with expertise in the neurology arena, and a physician assistant with over a decade of dermatology experience. We also recognize the need to partner with other specialties, to help gather clues and design a therapeutic plan. The latter may include the use of nutrition, traditional Chinese medicine, biologics (including the original biologic-supplemental gammaglobulin.

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USA – New York

Norman Marcus, MD
Pain Medicine
Norman Marcus Pain Institute
30 E. 40th Street
Ste 1100
New York, NY 10016
http://www.normanmarcuspaininstitute.com
212-532-7999
support@nmpi.com

Hospital affiliations:

  • Weill-Cornell Medicine

This professional is a member of the International Consortium on EDS and Related Disorders.

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Dr. Marcus is a member of the Pain Management Section of the EDS Consortium. He started the first pain center in New York City at Montefiore Hospital in 1977 and went on to direct multidisciplinary pain centers at Lenox Hill Hospital in NYC and Princess Margaret Hospital in Windsor, UK. He was trained in the evaluation and treatment of soft tissue pain by Hans Kraus, MD, President JFK’s physician for his back pain, who replaced Janet Travell when her treatments failed. Currently, the Director of Clinical Muscle Pain Research at Weill-Cornell Medicine, his practice deals with all aspects of chronic pain. He has invented an electric instrument that can identify specific muscles causing pain and stiffness so common in EDS patients. During the initial evaluation, each patient is tested for all possible sensitized muscles to facilitate a detailed treatment plan. Comprehensive treatment may include use of photobiomodulation, muscle tendon injections, physical therapy, treatment of symptoms of Mast Cell Activation Disorder, and use of a variety of analgesic medications.

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USA – New York

Angela Oddone, LCSW
psychotherapy, counseling, clinical social work, case management
Angela M. Oddone LCSW / Resiliency Strategies LLC
140 Rockingham Street
Rochester, NY 14620
http://www.angelaoddone.com
585-360-2900
angelamoddonemswlcsw@gmail.com

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EDS-knowledgeable, resiliency-oriented, strengths-based psychotherapist, counselor, coach, consultant, and case manager providing guidance and support for people who live with complex chronic conditions, pain and/or disability, particularly due to rare conditions, especially EDS/HSD. Includes support navigating the healthcare system, particularly one that is data/metrics driven and, as such, often fails to adequately or safely serve people with rare conditions such as EDS. Also includes support for families, friends and caregivers and other relationships that affect the quality of life for people living with EDS/HSD such as employers, co-workers, healthcare providers, etc.

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USA – New York

Bernadette Riley, DO, FACOFP
Family Medicine and Osteopathic Manipulative Treatment
Director of Ehlers-Danlos Syndrome /Hypermobility Treatment Center at NYIT
NYIT College of Osteopathic Medicine Ehlers-Danlos Syndrome Treatment Center
Riland Health Care Center
Old Westbury, NY 11568
https://www.nyit.edu/medicine/ehlers_danlos_syndrome_treatment_center
516-686-3894

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Our integrated team works together across specialties to offer a variety of services to help evaluate and design individualized treatment programs, including:

  • Primary care
  • Neurological examination
  • Osteopathic manipulation
  • Occupational therapy
  • Physical therapy
  • Speech therapy
  • Clinical psychology

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USA – New York

Leslie Russek, PT, DPT, PhD, Orthopaedic Specialist
Physical Therapy
Canton-Potsdam Hospital
49 Lawrence Avenue
Potsdam, NY 13676
https://www.cphospital.org/health-services/physical-rehabilitation
315-261-5460
Lrussek@clarkson.edu

Hospital affiliations:

  • Canton-Potsdam Hospital

This professional is a member of the International Consortium on EDS and Related Disorders.

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Dr. Russek treats patients part-time, specializing in Hypermobility Spectrum Disorders, Fibromyalgia, and chronic pain.

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USA – New York

Ryan Blanch, JD, ESQ
Patient Advocacy, Doctor referral
Blanch PC
261 Madison Avenue
12th Floor
New York 10016
United States
https://www.theblanchlawfirm.com/
2127363990
rblanch@blanchpc.com

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When our founder’s family member was finally diagnosed with Ehlers Danlos, our firm made a commitment to advocate for patient rights and to help locate the right medical professionals for patients all over the U.S.

All of our services are Pro Bono. We do not charge.

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USA – North Carolina

Matthew Snyder, PsyD, LPCS
Mental Health
Matthew T Snyder, LPCS
1915 George St
Hendersonville, North Carolina 28792
http://www.fullcirclewnc.org/
828-222-0401
matt@fullcirclewnc.org

This professional is a member of the International Consortium on EDS and Related Disorders.

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We are a holistic mental and emotional health center that emphasizes high quality, experienced clinical care and community based connection and activity.

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USA – Ohio

Subinoy Das, MD
Sinus disease, otolaryngology-head and neck surgery
US Institute for Advanced Sinus Care and Research
974 Bethel Road
Suite E
Columbus, Ohio 43214
http://www.usasinus.org/
614-538-2424 x1151
Info@usasinus.org

Hospital affiliations:

  • Riverside Memorial Hospital
  • Dublin Methodist Hospital
  • Nationwide Children’s Hospital

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I am a sinus disease expert that also suffers from Ehlers Danlos Syndrome. Sinus sufferers with EDS are often mismanaged because steroids are typically harmful for EDS patients. I enjoy caring for EDS patients because of my personal experience with the disease.

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USA – Ohio

Lindsay Hastings, LMT, Certified BowenWork Practitioner
LMT, Certified BowenWork Practitioner

Practice / Clinic 1:
Phoenix BodyWork & Apothecary
4434 Carver Woods Dr
Suite 300
Blue Ash, Ohio 45242

Practice / Clinic 2:
Phoenix BodyWork & Apothecary
31 E Mulberry St
Lebanon, Ohio 45036

513-507-7342
Phoenixmedicalmassage@yahoo.com

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Body work that is clinical, gentle and non invasive. BowenWork specifically works with connective tissue imbalances; it relaxes spasmodic areas yet tones the muscles that are too weak or unstable. BowenWork tones and “matures” the nervous system.

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USA – Ohio

Jennifer Lobert, MD
Rheumatology; Internal Medicine
Jennifer Lobert MD LLC / Comprehensive Musculoskeletal Care
9403 Kenwood Road
Suite D105
Blue Ash, OH 45242
http://www.lobertcmc.com
513-318-1695
drlobert@lobert.com

Hospital affiliations:

  • The Christ Hospital

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We are a membership practice specializing in treating patients with complex pain conditions.

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USA – Oregon

Osvaldo Schirripa, M.D., M.S.
Clinical and Molecular Genetics
Central Oregon Clinical Genetics Clinic
143 SW Shevlin-Hixon Drive, suite 203
Bend, OR 97702
541-678-5417
cocgenetics@gmail.com

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Dr. Schirripa’s training:

Clinical Genetics at The Children’s Hospital, Denver, Colorado.

Molecular Genetics at The University of Colorado Health Science Center, Denver, Colorado.

Clinical Cancer Genetics at The City of Hope Medical Center, National Cancer Center, Duarte, California.

Dr. Schirripa is also an Anatomic and Clinical Pathologist with training in Molecular Pathology.

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USA – Pennsylvania

Nicholas DePace, MD, FACC
Cardiology, Autonomic Dysfunction, POTS, Ehlers-Danlos Syndrome, Chronic Fatigue Syndrome

Practice / Clinic 1
Franklin Cardiovascular Associates, PA
2300 S. Broad Street
Suite 201
Philadelphia, PA 19145

Practice / Clinic 2
Vineland Office
2848 S. Delsea Drive
Vineland, NJ 08460

Practice / Clinic 3
Sewell Office
438 Ganttown Rd
Suite 8 & 9
Sewell, NJ 08080

https://franklincardiovascular.com/
(856) 589-6034
rsantiagofca@outlook.com

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Here are some of the services that are offered in the Franklin Cardiovascular:
Hospital Care
Congestive Heart Failure and Cardiac Transplantation Assessment
Transesophageal Echocardiography
Sleep Apnea Testing
Emergency Care
Bi-V Defibrillator Insertion and Monitoring
Pacemaker Insertion and Monitoring
Defibrillator Insertion and Monitoring
Electrophysiologic Testing
Arrhythmia Ablation
Cardiac Catheterization
Peripheral Renovascular Angiography
Peripheral Vascular Angiography
Coronary Angioplasty and Stenting
Cardiac Rehabilitation

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USA – Pennsylvania

Aviva Gaskill, PhD
Psychologist
Aviva Gaskill, PhD
308 E. Lancaster Ave
Ste 200
Wynnewood, PA 19096
https://www.avivagaskill.com/
484-679-6299
aviva@avivagaskill.com

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I am a clinical psychologist specializing in the treatment of young adults and adults living with chronic and terminal illness and co-occurring psychological concerns. I utilize integrative therapeutic techniques in my practice to aid patients and their families to cope with the process of living with and/or caregiving for individuals with chronic and terminal illness and comorbid mental health issues.

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USA – Pennsylvania

Laura Jacobs, DPT
EDS, POTS, Hyper Mobility Syndrome
Fyzical Therapy & Balance Centers
6402 Carlisle Pike
Mechanicsburg, Pennsylvania 17050
https://www.fyzical.com/mechanicsburg
(717) 591-3000
Kris.Swingle@fyzical.com

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FYZICAL Mechanicsburg located in Mechanicsburg, PA is a medical and scientific-based physical therapy and fitness organization with a broad range of expertise. Spelled different because we are different! Founded in collaboration with a medical doctor, physiologists, licensed therapists and service business experts, we provide prescribed physical therapy and medically-based physical fitness. Yet we are much more than your typical physical therapy clinic. Our goal at FYZICAL is to help you discover how to achieve the pinnacle of healthy living, expand your boundaries, feel younger and revitalize your health.

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USA – Pennsylvania

Marta Kolthoff, MD
Clinical Genetics
Allegheny Health Clinic
West Penn Hospital
4800 Friendship Ave GR59 Mellon Pavilion
Pittsburgh, PA 15217
412-578-3951
Marta.KOLTHOFF@ahn.org

Hospital affiliations:

  • West Penn Hospital

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Specializing in Ehlers-Danlos Syndrome and other heritable connective tissue disorders. Dr. Kolthoff’s clinic takes place once a month at West Penn Hospital in Pittsburgh, Pennsylvania.

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USA – Pennsylvania

Mark Lavallee, M.D., C.S.C.S., F.A.C.S.M.
Family Medicine, Sports Medicine, Orthopedics

Practice / Clinic 1
Thomas Hart Family Practice Clinic (Ehlers-Danlos Clinic)
Marie Ketterman Building at York Hospital
1001 South George Street
York, PA 17403
http://www.wellspan.org/provider-search/profile/Mark-Lavallee-MD-Sports-Medicine-York-PA/2120

Practice / Clinic 2
Sports Medicine (non-surgical orthopedics)
2319 South George Street

York, PA 17403
http://www.wellspan.org/provider-search/profile/Mark-Lavallee-MD-Sports-Medicine-York-PA/2120

717-851-2521
mlavallee@wellspan.org

Hospital affiliations:

  • Ass’t Clinical Professor, Pennsylvania State University, College of Medicine, Hershey, PA
  • Adjunct Clinical Professor, Drexel University, School of Medicine, Philadelphia, PA

This professional is a member of the International Consortium on EDS and Related Disorders.

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I see all my new ehlers-Danlos Patient initially at my Family Medicine clinic at York Hospital. Then, those needing advanced orthopedic consultation, I will see at my sports medicine clinic down the street. I ask patients to supply the following information at least 1 week PRIOR to their scheduled appointment so I may review ahead of their appointment. 1) 1-2 page outline of their symptoms, surgeries, treatment successes and failures 2) any relavent operative reports 3) any medical genetic report or labs 4) any clinical recent and relevant imaging.

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USA – Pennsylvania

Kenneth Liu, MD, FAANS, FACS
Neurological Surgery, Neurovascular Surgery
Penn State Milton S. Hershey Medical Center
30 Hope Drive
Hershey, PA 17033
http://hmc.pennstatehealth.org/neurosurgery
717-531-3828
kenneth.c.liu.md@gmail.com

Hospital affiliations:

  • Penn State Milton S. Hershey Medical Center

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Dr. Liu is a board-certified, fellowship-trained neurosurgeon specializing in open vascular and endovascular neurosurgery and utilizes advanced techniques and technology to tailor treatment to each individual patient. He has extensive experience in the treatment of intracranial hypertension with stents and shunts, particularly in the EDS population, as well as extensive experience in the treatment of strokes and intracranial hemorrhages.

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USA – Pennsylvania

Kimberly Poehlmann, PT, DPT
Physical Therapy, Chronic Pain, Hypermobility Disorders
PHOENIX Rehabilitation & Health Services
800 Bethlehem Pike
Suite 2
Sellersville, Pennsylvania 18960
United States
https://www.phoenixrehab.com/sellersville/
6106989780
kpoehlmann@phoenixrehab.com

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At PHOENIX, we believe that patient care should be efficient, purposeful and cost effective. These drivers are guided by the principles of employee satisfaction and quality clinical outcomes delivered in a customer friendly and professional health care environment. When you choose PHOENIX, you join a family. Our highly trained staff is dedicated to helping you feel like you again. From your first appointment to your last, you can expect the highest quality of care.

We offer physical therapy services to address pain, weakness, and factors contributing to overall movement dysfunction. Whether you have experienced an acute illness/injury or an overall decline in your ability to participate in daily life, we will perform a comprehensive evaluation in order to design a specific, goal-oriented treatment plan for helping you get back to doing the things you love.

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USA – Rhode Island

Michael Healy, PT, DPT, DOMTP, IOMT, CPT, CSN, MBA
Physical Therapy, Advanced Manual Therapy, Craniosacral Therapy, Sports Medicine
Healy Physical Therapy & Sports Medicine, Inc.
927 B Warren Avenue
East Providence, RI 02914
http://www.healyphysicaltherapy.com
401-438-0905
info@healypt.necoxmail.com

This professional is a member of the International Consortium on EDS and Related Disorders.

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Our dedicated staff offers the highest quality of physical therapy services to promote your optimal health and function. We pride ourselves on successful outcomes and outstanding service. Our therapists give their patients their full one-on-one attention during each treatment session.

We accept all major insurances, and offer convenient hours with initial visits seen within 24 -48 hours of referral. We are fluent in English, Portuguese and Spanish.

We offer four convenient locations serving Rhode Island ( RI ) and Southeastern Massachusetts ( MA ) patients as well as out of state and international patients. It would be our pleasure to meet you and have the opportunity to help you achieve your physical therapy goals.

We offer comprehensive and individualized evaluations and treatment sessions, with a focus on patient education, manual (hands-on care), and evidenced-based treatment techniques.

Basically, we improve lives through pain relief. Our team of experts is experienced at helping those who suffer from:

  • Connective Tissue Disorders
  • Ehlers Danlos Syndrome
  • Marfan Syndrome
  • Loeys-Dietz Syndrome
  • Craniocervical Instability
  • Cervical Instability

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USA – Rhode Island

Pradeep Chopra, MD, MHCM
Complex Pain Medical conditions.
Brown M
102 Smithfield Ave.
Pawtucket, RI 02860
http://www.painri.com
401-729-4985 ext 211
snapa102@gmail.com

This professional is a member of the International Consortium on EDS and Related Disorders.

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I have a special interest in managing chronic complex pain conditions. In patients with EDS this means not just understanding the cause of the pain but also figuring out what else is preventing them from functioning or contributing to their difficulty with functioning. It may mean managing fatigue, anxiety and brain fog. Finding solutions with associated conditions such as POTS / Dysauotonomia, Mast Cell Activation Syndrome (MCAS), mitochondrial dysfunction, chiari malformation, cranio cervical instability, tethered cord syndrome, gastrointestinal issues. My job is to put all these together and connect the dots, start treatments and make recommendations.

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USA – Rhode Island

Petra Klinge, MD, PhD, IFAANS
Neurosurgery
Neurosurgery Department, Life span physician group, Rhode Island Hospital
593 Eddy Street
APC 6th floor
Providence, RI 2903
https://brownneurosurgery.com/our-team/
401-464 2411
pklinge@lifespan.org

Hospital affiliations:

  • Rhode Island Hospital
  • Hasbro Childrens Hospital

This professional is a member of the International Consortium on EDS and Related Disorders.

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My clinical practice comprises neurosurgical management of Chiari, Syringomyelia and tethered cord and associate Cerebrospinal fluid disorders.

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USA – Rhode Island

Kevin Muldowney, PT
Physical Therapy

Practice / Clinic 1
Muldowney Physical Therapy
667 Atwood Ave
Cranston, RI 02920
http://www.Muldowneypt.com

Practice / Clinic 2
Muldowney Physical Therapy North
261 Main Street
North Smithfield, RI 02896
http://www.muldowneypt.com

401-766-0022
Muldowneypt@gmail.com

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Our practice treated over 100 EDS Patients per week. We use both manual therapy techniques to align the joints as well as our own exercise protocol specifically designed for the EDS population to strengthen every joint I. The body.

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USA – South Carolina

Susan Chalela, MPT
Physical Therapy for EDS and hyper mobility, ergonomics, neuro, ortho, pilates, posture, osteoporosis
Fyzical Therapy and Balance Center Charleston
125 River Landing Dr.
Suite 103
Daniel Island, SC 29492
http://www.fyzical.com/charleston
843-377-8210
schalela@fyzical.com

This professional is a member of the International Consortium on EDS and Related Disorders.

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My practice is an outpatient private practice physical therapy practice specializing in EDS and hyper mobility syndrome. Also see ortho, neuro, posture, ergonomics, pilates and osteoporosis.

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USA – Tennessee

Seth Banks, MD
Internal Medicine
Heritage Medical Associates – Mount Juliet
660 S. Mount Juliet Road
Suite 100
Mount Juliet, TN 37122
https://www.heritagemedical.com/locations/mt-juliet/
629-255-2071
sbanks@heritagemedical.com

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Outpatient primary care practice

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USA – Tennessee

Jessica Huddleston, LPC-MHSP
Neuropsychological evaluations, Psychological evaluations, Counseling

Practice / Clinic 1
Sabin Behavioral Health
695 President Place
Ste 202
Smyrna, TN 37167
http://www.wardtoday.com

Practice / Clinic 2
Sabin Behavioral Health
404 N Castle Heights Ave
Ste F
Lebanon, TN 37167
615-269-4990
office@sabintn.com

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We have been providing psychological services in Middle Tennessee since 1977. Our mission is to offer comprehensive and empirically based psychological evaluations and treatment in a confidential and professional manner. Our practice offers assessments and counseling including individual and group therapy.

We currently have a group especially for people with EDS run by Ms. Jessica Huddleston in both Lebanon, TN and Smyrna, TN.

Ms. Huddleston works with clients of all age ranges beginning at the age of 4. She has a special interest in EDS, OCD and other co-occurring disorders. She is a member of the OCD International Foundation and she recently attended the DYSAUTONOMIA INTERNATIONAL CONFERENCE in Nashville.

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USA – Texas

Sarah Kelly, MD
Internal Medicine, Pathology (not actively practicing)
The Kelly Clinic
5503 FM 359, Suite C
Richmond, TX 77406
http://kellyclinic.net
281-828-0675
doctors@kellyclinic.net

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The Kelly Clinic, run by husband-wife team of Drs. Sarah and John Kelly, is an internal medicine practice that specializes in the primary care of adults and adolescents. Dr. Sarah Kelly, residency trained in both internal medicine (Mayo Clinic Arizona) and pathology (University of New Mexico), is affected by hypermobile Ehlers Danlos Syndrome (hEDS) and has a special area of interest and focus on the diagnosis and longterm management of Ehlers Danlos Syndrome, connective tissue disorders and “invisible disability” which is the focus of her practice within the clinic. As patients ourselves, we believe strongly in the healing power of the patient-doctor relationship and getting to the root of medical problems. This is the cornerstone of our practice. Our patients are entitled to thorough, affordable, easily accessible, personalized medical care. We recognize that all patients are unique and special and one-size fits-all approaches do not generally work for all patients. Therefore, rather than employing a more traditional, disease-centered approach to healing, we focus on the individual as a whole, not as a set of symptoms or diseases.

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USA – Texas

Jennifer Lemons, CGC
HSD/EDS, Cardiomyopathies, Heritable Channelopathies
UTHealth McGovern Medical School
6431 Fannin St.
MSB 3.142
Houston, Texas 77030
United States
7135006801
jennifer.m.lemons@uth.tmc.edu

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Affiliated with the University of Texas McGovern Medical School, our Medical Genetics clinic sees patients referred for clinical suspicion of EDS/HSD 1 day each week. During that time, we go through an extensive medical history intake, family history, and physical evaluation specific for EDS/HSD. Thorough discussions of the benefits and limitations of available genetic testing options are also discussed. Patients are then referred to appropriate specialists depending on each person’s unique needs and manifestations of the condition, which may include, but is not limited to: Rheumatology, Immunology, Gastroenterology, Cardiology, Hematology, Neurology, and physical therapists familiar with and knowledgeable about hypermobility.

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USA – Vermont

Miriam Sturgis, MD
Family Practice
Northwestern Georgia Health Center
4178 Highbridge Rd.
Fairfax, VT 05454

nmceds@nmcinc.org

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I practice part time Family Medicine, and care mainly for adults. I am currently closed to new patients, but I have experience with EDS patients and understand that it is very difficult in Vermont to find physicians with understanding of EDS, so I am making myself available to help diagnose EDS, especially hEDS and Hypermobility Spectrum Disorders, POTS, and to a lesser degree Mast Cell Activation Disorder, and on a limited basis to be the primary care provider for EDS patients. I am hoping to develop a list of EDS knowledgeable specialists.

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USA – Vermont

Dianne Villani, APRN
family medicine, functional medicine
Trillium Integrative Medicine
366 Dorset St
Suite 10
South Burlington, VT 05403
http://www.trilliumvt.com/
802-654-3562
dianne@trilliumvt.com

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Trillium Integrative Medicine is Vermont’s only certified Functional Medicine clinic. We treat complex chronic illness by looking for root causes, considering the complex web of interactions in a patient’s history, genetic makeup, physiology, and lifestyle that can lead to illness.

We integrate traditional Western medical practices with what are sometimes considered “alternative” or “integrative” medicine. When appropriate, we prescribe pharmaceutical medications to alleviate symptoms. Then we work with our patients to create wellness through nutrition, diet, and exercise; use of the latest laboratory testing and other diagnostic techniques; and prescribed botanical medicines, supplements, therapeutic diets, detoxification programs, or stress-management techniques.

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USA – Virginia

Patrick Agnew, DPM
Podiatric Medicine and Surgery
Coastal Podiatry Group and Eastern Virginia Medical School
6477 College Park Square suite 102-108
Virginia Beach, VA 23464
http://www.coastalpodiatrygroup.com/
757-523-0414
cgp108@aol.com

Hospital affiliations:

  • SENTARA Norfolk General Hospital
  • SENTARA Leigh Memorial Hospital
  • Childrens Hospital of the Kings Daughters

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Our practice was founded in 1987 and continues to provide comprehensive foot and ankle care today. We have a free standing private practice in Virginia Beach and a clinic within Eastern Virginia Medical School. Our practice is an affiliated training site for Eastern Virginia Medical School. Dr. Agnew is the founder and Director of the Eastern Virginia Medical School Podiatric Medical and Surgical Residency.

Here we also conduct clinical research. We have generated many abstracts, journal manuscripts and book chapters, as well as multimedia content. We enjoy hospital privileges at several teaching hospitals in the SENTARA system, Children’s Hospital of the Kings Daughters and Chesapeake Regional Medical Center.

Dr. Agnew is a past president, Fellow and member of the Board of Directors of the American College of Foot and Ankle Pediatrics. He became a member of the EDNF during the 2nd Annual Meeting.

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USA – Virginia

Christopher Johnson, MSW, LCSW, BCD
Psychology, Psychotherapy, Substance Use Disorders, Sexual Trauma, Chronic Pain, Co-Occuring Disorders
Therapy by Chris
11350 Random Hills Road, 8th Floor
Fairfax, VA 22030
https://www.therapybychris.com/

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I am an interactive, person-centered psychotherapist. My therapeutic approach is to provide support and pragmatic feedback to help my clients effectively address personal life challenges. I integrate complementary methodologies and techniques to offer a highly personalized approach tailored to each client. With compassion and understanding, I work with each individual to help build on their strengths and attain the personal growth they desire. My wife has Classical EDS, so I have first-hand experience in the challenges faced by those suffering with EDS, and the frustration involved with this poorly understood diagnosis by so many medical providers. I do not currently take insurance, however I can assist with filing out of network medical claims if your plan offers this, and I also offer reasonable rates of $175 for an initial consultation and assessment, and $125 for follow-up psychotherapy sessions. I offer 10% off for active duty military, as well as Ehlers-Danlos Society members. Please check out my website for more information: www.therapybychris.com. I look forward to hearing from you!

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USA – Virginia

Bryce Lee, DPT
Physical Therapy, Supervised Strength Training
StrengthSpace, LLC
1512 Technology Drive
Suite 102
Chesapeake, VA 23320
http://www.strength-space.com
757-828-5627
Info@strength-space.com

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StrengthSpace is a supervised strength training cofounded by A physical therapist facility focused on joint friendly muscle strengthening. Strengthspace also serves as a shared treatment space for physical therapists who see private clients and enjoy access to the specific equipment available. Dr. Bryce Lee, DPT, Cofounder of StrengthSpace, also practices physical therapy independently out of the shared space alongside other private physical therapists.

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USA – Virginia

Amanda Miller Avila, PT, DPT, WCS
Physical Therapy, Pelvic and Abdominal Health
Progress Physical Therapy – Midlothian
2436 Colony Crossing Place
Suite 2
Midlothian, VA 23112
http://www.progressphysicaltherapy.com/
804-918-8515
amiller@progressphysicaltherapy.com

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Progress Physical Therapy – Midlothian is an Abdominal and Pelvic Health speciality center. We treat pediatrics through geriatrics, with an emphasis on one-on-one individualized manual and exercise therapies including neuromuscular re-eduation and biofeedback. We have a interest in hypermobility disorders in pediatrics as well as managing EDS symptoms during pregnancy and the postpartum period.

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USA – Virginia

Kristina Page, LMT
Massage Therapy
Nimbus Massage
1719 W. Main St.
Richmond, VA 23220
http://nimbusmassage.com
804-714-7932
kristina@nimbusmassage.com

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Nimbus Massage specializes in massage and complementary therapies for pain relief with a special focus on chronic pain. All of our therapists have or are working toward Board Certification and have pursued continuing education in therapeutic massage. We do in-house training on various chronic pain conditions including EDS/hypermobility.

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USA – Virginia

Robin Zachary, LMT
Massage Therapy
Nimbus Massage
1719 W. Main St.
Richmond, VA 23220
http://nimbusmassage.com
804-714-7932
robin@nimbusmassage.com

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Nimbus Massage specializes in massage and complementary therapies for pain relief with a special focus on chronic pain. All of our therapists have or are working toward Board Certification and have pursued continuing education in therapeutic massage. We do in-house training on various chronic pain conditions including EDS/hypermobility.

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USA – Washington

William Ericson, MD
Orthopedic hand/upper extremity surgery
Ericson Hand and Nerve Center
6100 219th St. SW
Suitw 540
Mountlake Terrace, WA 98043
http://www.ericsonhand.com
425-776-4444
ericsonhandcenter@icloud.com

Hospital affiliations:

  • Evergreen Hospital Medical Center, Kirkland, WA
  • Overlake Hospital, Bellevue, WA

This professional is a member of the International Consortium on EDS and Related Disorders.

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Exceptional education, training and experience in the evaluation and treatment of hand/wrist/arm pain, particularly chronic problems that do not show on standard diagnostic tests. Special interest in peripheral nerve problems, painful joint instability, tendonitis, arthritis, Ehlers Danlos Syndrome, previous failed hand surgery, minimally invasive surgery, innovations in hand surgery.

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USA – Washington

Sherene Shalhub, MD MPH FACS
Vascular Surgeon
Vascular and Endovascular Surgery Clinic at UWMC
1959 NE Pacific St., 1st Floor
Seattle, WA 98195
206-598-4477
shalhub@uw.edu

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Director, Multidisciplinary Vascular Genetics Clinic
Associate Professor of Surgery, Division of Vascular Surgery
University of Washington School of Medicine
Seattle, Washington

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USA – Washington

Ian Wallace, MS, CGC
Genetic Counseling, EDS diagnosis
Pullman Regional Hospital
1620 SE Summit
Pullman, WA 99163
https://pullmanregional.org/patient-care/services/genetic-counseling
509-332-5106
ian.wallace@pullmanregional.org

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I offer both telehealth and in-person appointments, so you don’t have to travel to Pullman, WA, if it’s not convenient. Wait-times for an appointment are generally 2-3 weeks.

Genetic counselors provide diagnostic testing, information, and support to families who may be at risk for a variety of inherited conditions and those who have a personal or family history of birth defects or genetic disorders. They identify families at risk, investigate the medical problems present in the family, interpret information about the disorder, analyze inheritance patterns and risks of recurrence, and review available genetic testing options with the family.

Genetic counseling is relevant to every medical specialty, however it plays an especially critical role in: connective tissue disorders, obstetrics, pediatrics, oncology, research, and testing.

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USA – Wisconsin

Linda Bluestein, MD
Anesthesiologist, Pain Management, Integrative Medicine
Wisconsin Integrative Pain Specialists
601 S 32nd Ave
Wausau, WI 54403
http://wisconsinintegrativepainspecialists.org
715-600-1722
Wisconsinintegrative@gmail.com

Hospital affiliations:

  • Aspirus Wausau Hospital

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At Wisconsin Integrative Pain Specialists (WIPS), expert care is provided for adults and teens suffering from persistent pain utilizing an integrative approach. We specialize in treating patients with Ehlers-Danlos Syndromes and related disorders. Dr. Bluestein also treats the fatigue, memory dysfunction, sleep disturbances and mood disorders that so commonly co-exist with these painful conditions. Dr. Bluestein is also very actively involved in spreading awareness about EDS and related disorders educating both healthcare professionals and high risk populations such as dancers and other athletes.

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USA – Wisconsin

Sumana Koduri, MD
Urogynecology, Female Pelvic Medicine and Reconstructive Surgery
Medical College of Wisconsin
Froedtert Memorial Lutheran Hospital clinics
9200 W. Wisconsin Ave.
Milwaukee, WI 53226
https://obgyn.mcw.edu/
414-805-8603
info@obgyn.mcw.edu

Hospital affiliations:

  • Froedtert Memorial Lutheran Hospital, Milwaukee, WI, USA
  • St. Joseph’s Hospital – West Bend, Wisconsin, WI, USA

This professional is a member of the International Consortium on EDS and Related Disorders.

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https://obgyn.mcw.edu/services/urogynecology/

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USA – Wisconsin

Nathan Rudin, MD, MA
Physical Medicine and Rehabilitation, Pain Medicine
UW Health Pain Management Clinic
1102 S Park Street, 3rd Floor
Madison, WI 53715
http://www.uwhealth.org/painclinic
608-263-9550

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I specialize in Pain Medicine, in the context of Physical Medicine and Rehabilitation. At our clinic we focus on treating the whole person in order to improve function and quality of life. I have special interest in EDS and other hypermobility disorders, and have worked with EDS patients for over 20 years. Our in-house team includes other rehab physicians, anesthesiologists, nurses, physician assistants, physical therapists, psychologists, and psychiatrists. We also perform EMG testing, trigger point injection, and a full range of interventional procedures.

Through UW Health we work with specialists in cardiology/vasovagal disorders/POTS, allergy/immunology, orthotics, gastroenterology, neurology, neurosurgery, genetics, and other areas of importance to the EDS patient.

I teach locally, regionally and nationally on pain management topics, and am working to increase awareness and treatment access for individuals with EDS and their families.

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