International Consortium Working Groups

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The working groups were formed to investigate the co-morbid diagnoses and symptoms associated with the Ehlers-Danlos syndromes, principally with the hypermobility type. The groups have been tasked to identify the links between these co-morbidities and the Ehlers-Danlos syndromes and hypermobility spectrum disorders, to identify research pathways, and to provide guidance for the best clinical strategies to care for people with each of the co-morbidities.


Allergy & Immunology Working Group

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Anne Maitland, MD, PhD
Allergy & Immunology Working Group Chair
Mast Cell (USA)

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Alan Hakim, MA, FRCP
Rheumatologist (UK)

Judy Eloed
Patient Expert (USA)

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Clair Francomano, MD
Classical Committee Chair
Geneticist (USA)


Allied Health Working Group

Jane Simmonds, MCSP, MMACP, FHEA (Chair)
Allied Health Working Group Chair
Physiotherapist (UK)

Cliffton Chan, PhD
Physical Assessment & Rehab (Australia)

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Inge De Wandele, PT, MT, PhD
Physiotherapy (Belgium)

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Raoul Engelbert
Physiotherapy (The Netherlands)

Gere Luder, PT MSc

Gere Luder, PT MSc
Physiotherapy (Belgium)

Muhammad Maarj

Muhammad Maarj
Podiatrist (Australia)

Leslie Nicholson
Physiotherapist (Australia)

Verity Pacey, PhD
Physiotherapy (Australia)

Nicole Pates
Paediatric Physiotherapist (Australia)

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Lies Rombaut
Physiotherapy (Belgium)

Stephanie Sabo
Physiotherapy (USA)

Alison Wesley, BSc, GDip OT, MEd
Occupational Therapist (Australia)

Nicoleta Woinarosky, BSocSc (Hon), MHK
Health Resources Consultant (Canada)

Sandy Smeenk
Patient Expert (Canada)

Dr Cylie Williams
Podiatrist (Australia)

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Sophie Roberts
Podiatrist (UK)

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Emily Rich
Occupational Therapist (USA)

Jeannie Di Bonn

Jeannie Di Bon
Movement Therapist (UK)


Autonomic Working Group

Christopher Mathias MBBS, DPhil, DSc, FRCP, FMedSci
Autonomic Working Group Chair
Autonomic (UK)

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Satish R. Raj, MD, MSCI, FRCPC
Cardiology (USA/Canada)

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Lauren Stiles
Patient Expert

OLYMPUS DIGITAL CAMERA

Alan Hakim, MA, FRCP
Rheumatologist (UK)


Diet and Nutrition Working Group

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Lorna Ryan, BA(hons), MA, DipION, mBANT, rCHNC
Diet and Nutrition Working Group Chair
Nutritionist, Nutritional Therapy Practitioner, Functional Medicine & Lifestyle Medicine (UK)

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Bonnie Nasar RDN
Dietician (USA)


Gastrointestinal Working Group

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Laura Pace, MD, PhD
Gastrointestinal Working Group Chair
Neurogastroenterologist (USA)

Qasim Aziz, MBBS, FRCP, PhD
Gastroenterology (UK)

Gisela Chelimsky, MD
Gastroenterology (USA)

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Asma Fikree, BMBCh, MA, MRCP, PhD
Gastroenterologist (UK)


Hematology Working Group

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Christina M. Laukaitis, MD, PhD
Hematology Working Group Chair
Geneticist (USA)

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Rohith Jesudas, MD
Pediatric Hematology/Oncology (USA)

Manjusha Kumar, MD

Manjusha Kumar, MD
Pediatric Hematology/Oncology (USA)

Howard Levy, MD, PhD
Geneticist (USA)

Lizzy Burke, ER RN
Registered Nurse (USA)


Neurology Working Group

Dr. Ilene Sue Ruhoy

Dr. Ilene Sue Ruhoy
Neurology Working Group Chair
Neurologist (USA)

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Petra Klinge, MD
Spinal Neurosurgeon (USA)

Myles B. Koby, MD
Radiologist (USA)

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David Saperstein
Neurologist (USA)

Gillian Ehrlich, DNP, ARNP
Doctor of Nursing Practice (USA)

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Dacre Knight
General Internal Medicine Physician (USA)


Oral Manifestations and Ear, Nose, and Throat Working Group

Alejandra Guasp

Alejandra Guasp
Biologist (Argentina)

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Dr Ulrike Lepperdinger
Dentist (Austria)


Orthopaedics Working Group

Cathy Raggio
Orthopaedics Working Group Chair
Orthopaedics (USA)

Patrick Agnew, DPM
Podiatrist (USA)

William B. Ericson, Jr., MD, FACS, FAAOS
Orthopaedic Hand Surgeon (USA)


Pain Management Working Group

Dr Helen Cohen has done research with a condition called chronic regional pain syndrome and has found very odd responses to visual stimuli which include an inability to perform simple drawing and writing tasks, 3rd August 2010

Helen Cohen, MB, BCh, MRCP, PhD
Pain Management Working Group Chair
Rheumatologist (UK)

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Pradeep Chopra, MD, MHCM
Pain Management (USA)

Norman Marcus, MD, DABPM
Pain Management (USA)

Nimish Mittal, MD
Physical Medicine & Rehabilitation (Canada)

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Maggie Buckley
Patient Expert (USA)


Paediatric Working Group

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Louise Tofts, MB BS, DCH, MRCPCH, MSpMed, FAFRM, FRACP
Paediatric Working Group Co-Chair
Paediatric Rehabilitation Specialist (Australia)

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Dr. Ellen Roy Elias
Paediatric Working Group Co-Chair
Pediatric Specialist (USA)

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Raoul Engelbert
Physiotherapy (The Netherlands)

Antonie Kline, MD
Paediatric Geneticist (USA)

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Constance “Connie” O’Connor
Nurse Practitioner (Canada)

Verity Pacey, PhD
Physiotherapy (Australia)

Brad Tinkle, MD, PhD
Geneticist (USA)

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Dr. Roberto Richheimer
Paediatrician and Paediatric Cardiologist (Mexico City)

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Sophie Roberts
Podiatrist (UK)

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Marion von Rossum


Pelvic Floor and Bladder Disorders Working Group

Natalie Blagowidow, MD
Pelvic Disorders Working Group Chair
Clinical Cytogenetics (USA)

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Qasim Aziz, MBBS, FRCP, PhD
Gastroenterology (UK)

Katrina Barton, PT, CDN
Physical Therapist (USA)

Rajiv Chawla, FRCA, FFPMRCA
Pain Management specialist (UK)

Shar Hashemi, MD FACS

Shar Hashemi, MD FACS
Surgeon (USA)

Carole High Gross, DPT, PT
Physical Therapist (USA)

Sumana Koduri, MD
Gynaecologist (USA)

Özkan Özdamar, MD
Gynaecologist (Turkey)

Kathryn Witzeman, MD
Gynaecologist (USA)

Megan Karanfil

Megan Karanfil
Patient Representative (USA)


Psychiatric and Psychological Aspects Working Group

Carolina Baeza-Velasco, MA, PhD
Psychiatric & Pyschological Aspects Working Group Chair

Charissa Hermine Frank

Charissa Frank
Patient Expert (Belgium)

Sarah Clark
Patient Expert

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Marisa Bergfield
Doctor of Psychology


Skin Working Group

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Nigel Burrows, MD, FRCP
Skin Working Group Chair
Dermatologist (UK)

Ingrid Hausser
Biomedical Scientist (Germany)

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Mark Lavallee, MD, CSCS, FACSM
Sports Medicine (USA)

Suranjith Seneviratne, DPhil(Oxon), MBBS, MD, DPath, MRCPath, MRCP, FRCP, FRCPath, FCCP
Professor and Consultant in Clinical Immunology and Allergy (USA)

Brent Doolan
Dermatologist (UK)

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