International Consortium Working Groups


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

Suranjith Seneviratne, MBBS, MD, FRCP, FRCPath, DPhil, FCCP
Allergy, Immunology & Mast Cell Working Group Chair
Mast Cell (Sri Lanka and UK)
Lawrence Afrin, MD
Mast Cell (USA)
Alan Hakim, MA, FRCP
Rheumatologist (UK)
Anne Maitland, MD, PhD
Mast Cell (USA)
Judy Eloed
Patient Expert (USA)

Allied Health Working Group

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

Autonomic Working Group

Christopher Mathias MBBS, DPhil, DSc, FRCP, FMedSci
Autonomic Working Group Chair
Autonomic (UK)
Inge De Wandele, PT, MT, PhD
Physiotherapy (Belgium)
Prof. Chris O’Callaghan
Pharmacology (Australia)
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)
Lisa Jamieson, MRPharmS
Pharmacist / Nutritionist (UK)
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)
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)

Neurology Working Group

Fraser Henderson, Sr., MD
Neurology Working Group Chair
Neurosurgeon (USA)
Paolo A. Bolognese, MD
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)
Nicol Voermans, MD, PhD
Neurologist (The Netherlands)

Oral Manifestations Working Group

Ines Kapferer-Seebacher
Oral Manifestations Working Group Chair
Periodontologist (Austria)
Brad Tinkle, MD, PhD
Geneticist (USA)

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)
Roger Wolman, MD, FRCP, FFSEM
Rheumatologist (UK)
Susan Chalela
Patient Expert

Pain Management Working Group

Pradeep Chopra, MD, MHCM
Pain Management Working Group Chair
Pain Management (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)
Stephanie Sabo
Physiotherapy (USA)
Brad Tinkle, MD, PhD
Geneticist (USA)
Rochelle Mclemore
Patient Expert

Pelvic Disorders Working Group

Thomas Chelimsky, MD
Pelvic Disorders Working Group Chair
MCW Neurologist (USA)
Ruksett 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)
Alime Buyuk Gonen
Physiotherapist
Carole High Gross, DPT, PT
Physical Therapist (USA)
Özkan Özdamar, MD
Gynaecologist (Turkey)
Vik Khullar, BSc, FRCOG, MD, AKC
Urology/Gynaecology (UK)
Sumana Koduri, MD
Gynaecologist (USA)
Kathryn Witzeman, MD
Gynaecologist (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)

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)
Daniel Manicourt
Rheumatologist (France)
John Sturgell
Patient Expert (USA)