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 & Mast Cell 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)

Autonomic Dysfunction Working Group

Christopher Mathias MBBS, DPhil, DSc, FRCP, FMedSci
Autonomic Dysfunction 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)
Peter Rowe, MD
Autonomic (USA)
Lauren Stiles Patient Expert

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)
Lisa Jamieson, MRPharmS
Pharmacist / Nutritionist (UK)
Angela Hunter
Patient Expert (UK)

Measuring Joint Hypermobility Working Group

Birgit Juul-Kristensen
Measuring JH Working Group Chair
Physiotherapy (Denmark)
Raoul Engelbert
Physiotherapy (The Netherlands)
Alan Hakim, MA, FRCP
Rheumatologist (UK)
Leslie Nicholson
Physiotherapist (Australia)
Kaisa Syväoja
Patient Expert

Neurology Working Group

Fraser Henderson, Sr., MD
Neurology Working Group Chair
Neurosurgeon (USA)
Paolo A. Bolognese, MD
Neurosurgeon (USA)
Stephen E. Grill, MD, PhD
Neurologist (USA)
Petra Klinge, MD
Spinal Neurosurgeon (USA)
Miles B. Koby, MD
Radiologist (USA)
Donlin M. Long, MD, PhD
Neurosurgeon (USA)
Harold Rekate, MD
Neurosurgeon (USA)
Eric L. Singman, MD, PhD
Neuro-ophthalmologist (USA)
Nicol Voermans, MD, PhD
Neurologist (The Netherlands)
Suzanne Volkman
Patient Expert (USA)

Oral and Mandibular Manifestations Working Group

Brad Tinkle, MD, PhD
Oral & Mandibular Manifestations Working Group Chair
Geneticist (USA)
Britta Bergland
Patient Expert (Sweden)

Orthopaedics Working Group

Cathy Raggio
Orthopaedics Working Group Chair
Orthopaedics (USA)
Patrick Agnew, DPM
Podiatrist (USA)
Deborah Higgs, MBBS, FRCS
Orthopaedic Shoulder Consultant (UK)
Roger Wolman, MD, FRCP, FFSEM
Rheumatologist (UK)
Susan Chalela
Patient Expert
Valérie Gisclard
Patient Expert (France)

Pain Management

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)
Jacqui Clinch, MBBS, FRCPC
Paediatric Rheumatologist (UK)
Felicity Collins
Clinical Geneticist (Australia)
Raoul Engelbert
Physiotherapy (The Netherlands)
Antonie Kline, MD
Paediatric Geneticist (USA)
Derek Neilson, MD
Medical Geneticist (USA)
Constance O'Connor
Nurse Practitioner (Canada)
Verity Pacey, PhD
Physiotherapy (Australia)
Clarissa Pilkington, MD
Rheumatology, Pediatrics (UK)
Stephanie Sabo
Physiotherapy (USA)
Susan Sencer, MD
Paediatric Haematologist and Oncologist (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)
Rachel Friedman, MD
Gynecologist (USA)
Alime Buyuk Gonen
Physiotherapist
Carole High Gross, DPT, PT
Physical Therapist (USA)
Özkan Özdamar, MD
Gynaecologist (Turkey)
Sumana Koduri, MD
Gynaecologist (USA)
Vik Khullar, BSc, FRCOG, MD, AKC
Urology/Gynaecology (UK)
Meenal Mujumdar, PT, PRPC, CLT
Physical Therapist (USA)
Kathryn Witzeman, MD
Gynaecologist (USA)

Physiotherapy Working Group

Jane Simmonds, MCSP, MMACP, FHEA
Physiotherapy Working Group Chair
Physiotherapist (UK)
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)
Susan Morris, Ph.D.
Expert in sensorimotor control (Australia)
Leslie Nicholson
Physiotherapist (Australia)
Lies Rombaut
Physiotherapy (Belgium)
Stephanie Sabo
Physiotherapy (USA)
Verity Pacey, PhD
Physiotherapy (Australia)
Nicoleta Woinarosky
Health Resources Consultant (Canada)
Sandy Smeenk
Patient Expert (Canada)

Psychiatric and Psychological Aspects Working Group

Antonio Bulbena
Psychiatric & Pyschological Aspects Working Group Chair
Emily Casanova, PhD
Developmental and Molecular Biologist (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)
Daniel Manicourt
Rheumatologist (France)
John Sturgell
Patient Expert (USA)