International Consortium Committees

The steering committee oversees and coordinates the efforts of the International Consortium. The type-specific committees focus on the unique challenges of each type that make up the Ehlers-Danlos syndromes. 


Steering Committee

Lara Bloom
Executive Director, International
The Ehlers-Danlos Society
Peter Byers, MD
Vascular Committee Chair
Geneticist (USA)
Clair Francomano, MD
Classical Committee Chair
Geneticist (USA)
Alan Hakim, MA, FRCP
hEDS/HSD Committee Chair
Rheumatologist (UK)
Fransiska Malfait, MD, PhD
Rarer Types Committee Chair
Geneticist/Rheumatologist (Belgium)

Classical EDS Committee

Clair Francomano, MD
Classical Committee Chair
Geneticist (USA)
Karelle Bénistan, MD
General Practitioner, Post Graduate in Medical Genetics and Pain Management (France)
Jess Bowen, MSc, BSc
Registered Genetic Counsellor GCRB
Marina Colombi, PhD
Geneticist (Italy)
Daniel S. Greenspan, Ph.D.
Professor of Cell and Regenerative Biology (USA)
Mark Lavallee, MD, CSCS, FACSM
Sports Medicine (USA)
Fransiska Malfait, MD, PhD
Geneticist/Rheumatologist (Belgium)
Christina Schwarting
Patient Expert (Germany)
Deutsche Ehlers-Danlos Initiative
Suzanne Volkman
Patient Expert (USA)

Hypermobile EDS and Hypermobility Spectrum Disorders Committee

Alan Hakim, MA, FRCP
Hypermobility Committee Chair
Rheumatologist (UK)
Fraser Burling (BHB, MBChB, Dip MSM, FRACP)
Rheumatologist (New Zealand)
Cliffton Chan, PhD
Physical Assessment & Rehab (Australia)
Marco Castori, MD, PhD
Geneticist (Italy)
Hanna Kaz Kaz, BA, MSc, MB
Rheumatologist (UK)
Howard Levy, MD, PhD
Geneticist (USA)
Verity Pacey, PhD
Physiotherapist (Australia)
Lies Rombaut
Physiotherapist (Belgium)
Brad Tinkle, MD, PhD (Chair)
Geneticist (USA)
Louise Tofts, MB BS, DCH, MRCPCH, MSpMed, FAFRM, FRACP
Paediatric Rehabilitation Specialist (Australia)
Claire Smith
Patient Expert (UK)

Vascular Committee

Sherene Shalhub, MD, MPH, FACS
Vascular Committee Chair
Vascular Surgeon (USA)
Peter Byers, MD
Vascular Committee Co-chair
Geneticist (USA)
Michael Frank, MD
Cardiologist (France)
Xavier Jeunemaitre, MD, PhD
Cardiologist (France)
Dr. Diana Johnson
Geneticist (UK)
Lauren Puryear, MS
Genetic Counselor (USA)
Dr. Leema Robert
Geneticist (UK)
Fleur van Dijk, MD, PhD
Geneticist (UK)

Rarer Types Committee

Fransiska Malfait, MD, PhD
Rarer Types Committee Chair
Geneticist/Rheumatologist (Belgium)
Fleur van Dijk, MD, PhD
Geneticist (UK)
Sylvie Fournel-Gigleux, PhD
Geneticist (France)
Claire Green, MSC
Genetic Counsellor (UK)
Marianne Rohrbach, MD, PhD
Geneticist (Switzerland)
Johannes Zschocke, MD, PhD
Geneticist (Austria)
Caroline Van Mourik
Patient Expert (Ehlers-Danlos syndrom Rlksforbund Sverige)
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