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)
Susan Chalela, MPT
Physiotherapist (USA)
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)
Carole High Gross, PT, DPT
Physiotherapist (USA)
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)
Nicole Pates
Paediatric Physiotherapist (Australia)
Lies Rombaut
Physiotherapy (Belgium)
Stephanie Sabo
Physiotherapy (USA)
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)

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)

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)
Shar Hashemi, MD FACS
Surgeon (USA)
Petra Klinge, MD
Spinal Neurosurgeon (USA)
Miles B. Koby, MD
Radiologist (USA)
Eric L. Singman, MD, PhD
Neuro-ophthalmologist (USA)
Nicol Voermans, MD, PhD
Neurologist (The Netherlands)

Oral Manifestations Working Group

John Mitakides, DDS, DAACP
Oral Manifestations Working Group Chair
TMJ (USA)
Brad Tinkle, MD, PhD
Geneticist (USA)

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

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)
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)
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)
Meenal Mujumdar, PT, PRPC, CLT
Physical Therapist (USA)
Kathryn Witzeman, MD
Gynaecologist (USA)

Psychiatric and Psychological Aspects Working Group

Antonio Bulbena
Psychiatric & Pyschological Aspects Working Group Chair
Emily Casanova, PhD
Developmental and Molecular Biologist (USA)
Kathryn Walker
Psychologist (Canada)
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)