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

Anne Maitland, MD, PhD
Allergy & Immunology Working Group Chair
Mast Cell (USA)
Alan Hakim, MA, FRCP
Rheumatologist (UK)
Judy Eloed
Patient Expert (USA)

Allied Health Working Group

Jane Simmonds, MCSP, MMACP, FHEA
Allied Health Working Group Chair
Physiotherapist (UK)
Rukset Attar, MD
Obstetrics and Gynecology (Turkey)
Cliffton Chan, PhD
Physical Assessment & Rehab (Australia)
Inge De Wandele, PT, MT, PhD
Physiotherapy (Belgium)
Jan Dommerholt, PT, DPT, DAIPM
Physical therapist (USA)
Raoul Engelbert
Physiotherapy (The Netherlands)
Birgit Juul-Kristensen
Physiotherapy (Denmark)
Gere Luder, PT MSc
Physiotherapy (Belgium)
Muhammad Maarj
Podiatrist (Australia)
Susan Morris, PhD
Expert in sensorimotor control (Australia)
Leslie Nicholson
Physiotherapist (Australia)
Verity Pacey, PhD
Physiotherapy (Australia)
Nicole Pates
Paediatric Physiotherapist (Australia)
Lies Rombaut
Physiotherapy (Belgium)
Stephanie Sabo
Physiotherapy (USA)
Alison Wesley, BSc, GDip OT, MEd
Occupational Therapist (Australia)
Nicoleta Woinarosky
Health Resources Consultant (Canada)
Sandy Smeenk
Patient Expert (Canada)
Cylie Williams
Podiatrist (Australia)
Sophie Roberts
Podiatrist (UK)

Autonomic Working Group

Christopher Mathias MBBS, DPhil, DSc, FRCP, FMedSci
Autonomic Working Group Chair
Autonomic (UK)
Inge De Wandele, PT, MT, PhD
Physiotherapy (Belgium)
Satish R. Raj, MD, MSCI, FRCPC
Cardiology (USA/Canada)
Lauren Stiles Patient Expert

Diet and Nutrition Working Group

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

Gastrointestinal Working Group

Qasim Aziz, MBBS, FRCP, PhD
Gastrointestinal Working Group Chair
Gastroenterology (UK)
Gisela Chelimsky, MD
Gastroenterology (USA)
Heidi Collins, MD
Physical Medicine and Rehab (USA)
Asma Fikree, BMBCh, MA, MRCP, PhD
Gastroenterologist (UK)
Laura Pace, MD, PhD
Neurogastroenterologist (USA)
Stephen W. Porges, PhD
Psychiatrist/Researcher (USA)
Angela Hunter
Patient Expert (UK)

Hematology Working Group

Christina M. Laukaitis, MD, PhD
Hematology Working Group Chair
Geneticist (USA)
Rohith Jesudas, MD
Pediatric Hematology/Oncology (USA)
Manjusha Kumar, MD
Pediatric Hematology/Oncology (USA)
Howard Levy, MD, PhD
Geneticist (USA)
Sarah O’Brien, MD, MSc
Professional (USA)

Neurology Working Group

Fraser Henderson, Sr., MD
Neurology Working Group Chair
Neurosurgeon (USA)
Naomi Feuer, MD
Neurologist (USA)
Shar Hashemi, MD FACS
Surgeon (USA)
Petra Klinge, MD
Spinal Neurosurgeon (USA)
Myles B. Koby, MD
Radiologist (USA)

Oral Manifestations and Ear, Nose & Throat Working Group

Ines Kapferer-Seebacher
Oral Manifestations Working Group Chair
Periodontologist (Austria)
Alejandra Guasp
Biologist (Argentina)

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)
Susan Chalela
Patient Expert

Pain Management Working Group

Pradeep Chopra, MD, MHCM
Pain Management Working Group Chair
Pain Management (USA)
Rukset Attar, MD
Obstetrics and Gynecology (Turkey)
Nimish Mittal, MD
Physical Medicine & Rehabilitation (Canada)
Maggie Buckley
Patient Expert (USA)

Paediatric Working Group

Louise Tofts, MB BS, DCH, MRCPCH, MSpMed, FAFRM, FRACP
Paediatric Working Group Chair
Paediatric Rehabilitation Specialist (Australia)
Raoul Engelbert
Physiotherapy (The Netherlands)
Antonie Kline, MD
Paediatric Geneticist (USA)
Constance O’Connor
Nurse Practitioner (Canada)
Verity Pacey, PhD
Physiotherapy (Australia)
Brad Tinkle, MD, PhD
Geneticist (USA)
Rochelle Mclemore
Patient Expert (USA)
Dr. Roberto Richheimer
Paediatrician and Paediatric Cardiologist (Mexico City)
Sophie Roberts
Podiatrist (UK)

Pelvic Disorders Working Group

Natalie Blagowidow, MD
Pelvic Disorders Working Group Chair
Clinical Cytogenetics (USA)
Rukset Attar, MD
Obstetrics and Gynecology (Turkey)
Qasim Aziz, MBBS, FRCP, PhD
Gastroenterology (UK)
Katrina Barton, PT, CDN
Physical Therapist (USA)
Rajiv Chawla, FRCA, FFPMRCA
Pain Management specialist (UK)
Gisela Chelimsky, MD
Gastroenterology (USA)
Thomas Chelimsky, MD
MCW Neurologist (USA)
Alime Buyuk Gonen
Physiotherapist
Robyn Hickmott, APAM
Physiotherapist APAM (Australia)
Carole High Gross, DPT, PT
Physical Therapist (USA)
Vik Khullar, BSc, FRCOG, MD, AKC
Urology/Gynaecology (UK)
Sumana Koduri, MD
Gynaecologist (USA)
Özkan Özdamar, MD
Gynaecologist (Turkey)
Kathryn Witzeman, MD
Gynaecologist (USA)
Megan Karanfil
Patient Representative (USA)

Psychiatric and Psychological Aspects Working Group

Antonio Bulbena, MD, PhD, MSc
Psychiatric & Pyschological Aspects Working Group Chair
Psychiatry (Spain)
Emily Casanova, PhD
Developmental and Molecular Biologist (USA)
Stephen W. Porges, PhD
Psychiatrist/Researcher (USA)
Charissa Frank
Patient Expert (Belgium)

Skin Working Group

Nigel Burrows, MD, FRCP
Skin Working Group Chair
Dermatologist (UK)
Ingrid Hausser
Biomedical Scientist (Germany)
Barry LaBine, MD
Dermatologist (USA)
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)
John Sturgell
Patient Expert (USA)