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
• Classical EDS Working Group
• Hypermobile EDS and Hypermobility Spectrum Disorders Working Group
• Vascular Working Group
• Rarer Types Working Group

Steering Committee

Lara Bloom
President and CEO
The Ehlers-Danlos Society

Clair Francomano, MD
Medical and Scientific Board Chair
Geneticist (USA)

Alan Hakim, MA, FRCP
hEDS/HSD Working Group Chair, Chief Medical Officer
Rheumatologist (UK)

Fransiska Malfait, MD, PhD
Chief Scientific Officer
Geneticist/Rheumatologist (Belgium)

Sherene Shalhub, MD, MPH, FACS
Vascular Working Group Co-chair
Vascular Surgeon (USA)

Glenda Sobey, MB ChB, BSc Med (Hons), FC Derm
Vascular Working Group Co-chair
Geneticist (UK)

Jess Bowen, MSc, BSc
Classical Working Group Chair
Registered Genetic Counsellor GCRB

Serwet Demirdas, MD, PhD
Rarer Types Working Group Co-Chair
Clinical Geneticist (The Netherlands)

Marianne Rohrbach, MD, PhD
Rarer Types Working Group Co-Chair
Geneticist (Switzerland)

Classical EDS Working Group

Jess Bowen, MSc, BSc
Classical Working Group Chair
Registered Genetic Counsellor GCRB

Clair Francomano, MD
Geneticist (USA)

Karelle Bénistan, MD
General Practitioner, Post Graduate in Medical Genetics and Pain Management (France)

Nigel Burrows, MBBS, MD, FRCP
Dermatologist (UK)

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
Rarer Types Committee Chair
Geneticist/Rheumatologist (Belgium)

Glenda Sobey, MB ChB, BSc Med (Hons), FC Derm
Geneticist (UK)

Christina Schwarting
Patient Expert (Germany)
Deutsche Ehlers-Danlos Initiative

Ronny Kershenovich, MD
Geneticist (Mexico)

Hypermobile EDS and Hypermobility Spectrum Disorders Working Group

Alan Hakim, MA, FRCP
hEDS/HSD Working Group 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)

Helen Cohen, MB, BCh, MRCP, PhD
Rheumatologist (UK)

Inge De Wandele, PT, MT, PhD
Physiotherapy (Belgium)

Rodney Grahame CBE, MD, FRCP, FACP, FRSA
Rheumatologist (UK)

Claude Hamonet, MD, PhD
Rehab (France)

Hanna Kaz Kaz, BA, MSc, MB
Rheumatologist (UK)

Howard Levy, MD, PhD
Geneticist (USA)

Laura McGillis, BNSc, MN, RN(EC)
Nurse Practitioner (Canada)

Dr. Nimish Mittal
Physical Medicine and Rehabilitation (Canada)

Verity Pacey, PhD
Physiotherapist (Australia)

Lies Rombaut
Physiotherapist (Belgium)

Brad Tinkle, MD, PhD
Geneticist (USA)

Louise Tofts, MB BS, DCH, MRCPCH, MSpMed, FAFRM, FRACP
Paediatric Rehabilitation Specialist (Australia)

Claire Smith
Patient Expert (UK)

Patricia Grether, MD
Medical Geneticist (USA)

Irman Forghani
Medical Geneticist (USA)

Vascular Working Group

Sherene Shalhub, MD, MPH, FACS
Vascular Working Group Co-chair
Vascular Surgeon (USA)

Glenda Sobey, MB ChB, BSc Med (Hons), FC Derm
Vascular Working Group Co-chair
Geneticist (UK)

Peter Byers, MD
Geneticist (USA)

Serwet Demirdas, MD, PhD
Clinical Geneticist (The Netherlands)

Michael Frank, MD
Cardiologist (France)

Xavier Jeunemaitre, MD, PhD
Cardiologist (France)

Dr. Diana Johnson
Geneticist (UK)

Lauren Puryear, MS
Genetic Counselor (USA)

Fleur van Dijk, MD, PhD
Geneticist (UK)

Nigel Wheeldon, MB, ChB MD, FRCP, FESC
Cardiologist (UK)

Rarer Types Working Group

Serwet Demirdas, MD, PhD
Rarer Types Working Group Co-Chair
Clinical Geneticist (The Netherlands)

Marianne Rohrbach, MD, PhD
Rarer Types Working Group Co-Chair
Geneticist (Switzerland)

Fransiska Malfait, MD, PhD
Geneticist/Rheumatologist (Belgium)

Fleur van Dijk, MD, PhD
Geneticist (UK)

Sylvie Fournel-Gigleux, PhD
Geneticist (France)

Cecilia Giunta, PhD
Geneticist (Switzerland)

Tomoki Kosho, MD, PhD
Geneticist (Japan)

Roberto Mendoza-Londono, MD, MSc, FACMG
Geneticist (Canada)

Neeti Ghali, MRCPCH, MD

Claire Green, MSC
Genetic Counsellor (UK)

Ines Kapferer-Seebacher

Johannes Zschocke, MD, PhD
Geneticist (Austria)

Caroline Van Mourik
Patient Expert (Ehlers-Danlos syndrom Rlksforbund Sverige)

Tammy Kammin
Genetic Counselor (UK)