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.
International Consortium Committees
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)
Peter Byers, MD
Geneticist (USA)
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)
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)
Ronny Kershenovich, MD
Geneticist (Mexico)
Carter Hemion
Patient Expert
Chloe Angwin
National EDS Service, London, National Health Service
Emily Woods
Sheffield Children’s Hospital NHS Foundation Trust
Alan Hakim, MA, FRCP
hEDS/HSD Working Group Chair
Rheumatologist (UK)
Fraser Burling (BHB, MBChB, Dip MSM, FRACP)
Rheumatologist (New Zealand)
Marco Castori, MD, PhD
Geneticist (Italy)
Helen Cohen, MB, BCh, MRCP, PhD
Rheumatologist (UK)
Laura McGillis, BNSc, MN, RN(EC)
Nurse Practitioner (Canada)
Claire Smith
Patient Expert (UK)
Dr. Nimish Mittal
Physical Medicine and Rehabilitation (Canada)
Lies Rombaut
Physiotherapist (Belgium)
Hanna Kaz Kaz, BA, MSc, MB
Rheumatologist (UK)
Howard Levy, MD, PhD
Geneticist (USA)
Brad Tinkle, MD, PhD
Geneticist (USA)
Louise Tofts, MB BS, DCH, MRCPCH, MSpMed, FAFRM, FRACP
Paediatric Rehabilitation Specialist (Australia)
Patricia Grether, MD
Medical Geneticist (USA)
Shahreyar Shar Hashemi
Nerve Bone & Joint Institute
Isabelle Le Ray
Integrative Systemic Medicine
Samia Boussouar
APHP Paris, France
Peter Byers, MD
Geneticist (USA)
Dr. Diana Johnson
Geneticist (UK)
Lauren Puryear, MS
Genetic Counselor (USA)
Serwet Demirdas, MD, PhD
Clinical Geneticist (The Netherlands)
Michael Frank, MD
Cardiologist (France)
Fleur van Dijk, MD, PhD
Geneticist (UK)
Nigel Wheeldon, MB, ChB MD, FRCP, FESC
Cardiologist (UK)
Neeti Ghali
National EDS service, London
Claire Green
Sheffield Children’s Hospital
Samia Boussouar
APHP Paris, France
Fransiska Malfait, MD, PhD
Geneticist/Rheumatologist (Belgium)
Emily Woods
Sheffield Children’s Hospital NHS Foundation Trust
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)
Roberto Mendoza-Londono, MD, MSc, FACMG
Geneticist (Canada)
Caroline Van Mourik
Patient Expert (Ehlers-Danlos syndrom Rlksforbund Sverige)
Cecilia Giunta, PhD
Geneticist (Switzerland)
Tomoki Kosho, MD, PhD
Geneticist (Japan)
