Medical Professionals Directory

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 Specialist locator. 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.

If you are a medical professional and wish to be listed in our directory, please submit your information here.

Jump to your country by using the links below.


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

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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

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

Practice / Clinic 1
Rheumi Occupational Therapy
PO Box 272
Frenchs Forest, NSW 1640
https://www.rheumi.com.au

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

0422746968
michelle@rheumi.com.au

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The uniqueness of the Rheumi Occupational Therapy service lies in Michelle’s extensive experience helping people to live as fully as possible with hypermobility & other chronic conditions. Michelle is able to offer you a big picture assessment of your needs, with individual recommendations on what steps to take next. Michelle’s experience working with adults with hypermobility conditions is unmatched by any Occupational Therapist in Australia.

Michelle offers face to face appointments in Sydney and ONLINE appointments Worldwide

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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

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

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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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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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

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

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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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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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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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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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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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

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

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

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

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

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

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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Australia

Louise Tofts, MBBS, DCH, MSpMed, FRACP, FAFRM
Paediatrics, Physical Medicine and Rehabilitation
Practice / Clinic 1
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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USA – Alaska

Nichelle Renk, MD
Pain Medicine, Anesthesiology
Algone
4001 Dale Street
Suite 105
Anchorage, AK 99508
http://www.algonealaska.com
907-770-1152
nrenk@aipcak.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

Torrey Foster, PT, DPT, OCS, CSCS
Physical Therapy – for details please use the following link: https://www.spoonerpt.com/programs/
Spooner Physical Therapy
9097 East Desert Cove Avenue, Suite 110
Scottsdale, AZ 85260
http://www.spoonerpt.com
480-860-4298
t.foster@spoonerpt.com

Type of clinic: Private

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Spooner Physical Therapy is a private outpatient rehabilitation practice dedicated to helping individuals of all ages and abilities achieve their maximum physical potential with the delivery of one-on-one personalized conditioning, physical therapy, and rehabilitation programs. Our therapists work closely with each patient to create unique programs that treat the cause of an injury in order to maximize results.
Based on our founding principle of “Health in Motion”, our treatment plans promote the greatest health possible through proper, effective, and comfortable movement, thereby enhancing the body’s ability to heal itself.

We believe we have a responsibility to contribute to the quality of life in our communities.

Today our company culture emits a high standard of excellence that has helped establish a favorable reputation in the community and amongst industry professionals.

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USA – Arizona

David Saperstein, MD
Neurology, Neuromuscular Disorders, Autonomic Disorders
Phoenix Neurological Associates
5090 N 40th ST
Suite 250
Phoenix, AZ 85018
http://www.phoenixneurology.com
602-258-3354
dsaperstein@pnal.net

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 – 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 – 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

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 – 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

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

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 – 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

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 – 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 – Maryland

Claudiu Austin, MD, MPH
Doctors Community Hospital
8118 Good Luck Rd
Lanham, MD 20706
301-552-8118
caustin@dchweb.org

Hospital affiliations:

  • Doctors Community Hospital
  • Washington Adventist Hospital

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

Fraser Henderson, MD
EDS/CHIARI
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 – 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

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 – 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

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 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

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
NYIT College of Osteopathic Medicine Ehlers-Danlos Syndrome Treatment Center
NYITCOM Riland Health Care Center, Riland Building, First Floor
Old Westbury, NY 11545
https://www.nyit.edu/medicine/ehlers_danlos_syndrome_treatment_center
516-686-1300
gcheriya@nyit.edu

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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.

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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

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 – 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

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 Drivd
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 – 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

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 – 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

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

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 – 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 – 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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