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 Committee
Hypermobile EDS and Hypermobility Spectrum Disorders Committee
Vascular Committee
Rarer Types Committee

Steering Committee

Lara Bloom

Executive Director, International

The Ehlers-Danlos Society

Peter Byers, MD

Peter Byers, MD

Vascular Committee Chair

Geneticist (USA)

Clair Francomano, MD

Clair Francomano, MD

Classical Committee Chair

Geneticist (USA)

Alan Hakim, MA, FRCP

Alan Hakim, MA, FRCP

hEDS/HSD Committee Chair

Rheumatologist (UK)

Fransiska Malfait, MD, PhD

Fransiska Malfait, MD, PhD

Rarer Types Committee Chair

Geneticist/Rheumatologist (Belgium)

Classical EDS Committee

Jess Bowen, MSc, BSc

Jess Bowen, MSc, BSc

Classical Committee Chair

Registered Genetic Counsellor GCRB

Clair Francomano, MD

Clair Francomano, MD

Geneticist (USA)

Karelle Bénistan, MD

Karelle Bénistan, MD

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

Nigel Burrows, MBBS, MD, FRCP

Nigel Burrows, MBBS, MD, FRCP

Dermatologist (UK)

Marina Colombi, PhD

Marina Colombi, PhD

Geneticist (Italy)

Daniel S. Greenspan, Ph.D.

Daniel S. Greenspan, Ph.D.

Professor of Cell and Regenerative Biology (USA)

Mark Lavallee, MD, CSCS, FACSM

Mark Lavallee, MD, CSCS, FACSM

Sports Medicine (USA)

Fransiska Malfait, MD, PhD

Fransiska Malfait, MD, PhD

Geneticist/Rheumatologist (Belgium)

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

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

Geneticist (UK)

Christina Schwarting

Christina Schwarting

Patient Expert (Germany)

Deutsche Ehlers-Danlos Initiative

Dr. Ronny Kershenovich

Ronny Kershenovich, MD

Geneticist (Mexico)

Hypermobile EDS and Hypermobility Spectrum Disorders Committee

Alan Hakim, MA, FRCP

Alan Hakim, MA, FRCP (Chair)

Hypermobility Committee Chair

Rheumatologist (UK)

Fraser Burling (BHB, MBChB, Dip MSM, FRACP)

Fraser Burling (BHB, MBChB, Dip MSM, FRACP)

Rheumatologist (New Zealand)

Cliffton Chan, PhD

Cliffton Chan, PhD

Physical Assessment & Rehab (Australia)

Marco Castori, MD, PhD

Marco Castori, MD, PhD

Geneticist (Italy)

Helen Cohen, MB, BCh, MRCP, PhD

Helen Cohen, MB, BCh, MRCP, PhD

Rheumatologist (UK)

Inge De Wandele, PT, MT, PhD

Inge De Wandele, PT, MT, PhD

Physiotherapy (Belgium)

Rodney Grahame CBE, MD, FRCP, FACP, FRSA

Rodney Grahame CBE, MD, FRCP, FACP, FRSA

Rheumatologist (UK)

Claude Hamonet, MD, PhD

Claude Hamonet, MD, PhD

Rehab (France)

Hanna Kaz Kaz, BA, MSc, MB

Hanna Kaz Kaz, BA, MSc, MB

Rheumatologist (UK)

Howard Levy, MD, PhD

Howard Levy, MD, PhD

Geneticist (USA)

Laura McGillis, BNSc, MN, RN(EC)

Laura McGillis, BNSc, MN, RN(EC)

Nurse Practitioner (Canada)

Dr. Nimish Mittal

Dr. Nimish Mittal

Physical Medicine and Rehabilitation (Canada)

Verity Pacey, PhD

Verity Pacey, PhD

Physiotherapist (Australia)

Lies Rombaut

Physiotherapist (Belgium)

Brad Tinkle, MD, PhD (Chair)

Brad Tinkle, MD, PhD

Geneticist (USA)

Louise Tofts, MB BS, DCH, MRCPCH, MSpMed, FAFRM, FRACP

Louise Tofts, MB BS, DCH, MRCPCH, MSpMed, FAFRM, FRACP

Paediatric Rehabilitation Specialist (Australia)

Claire Smith

Patient Expert (UK)

Patricia Grether

Patricia Grether, MD

Medical Geneticist (USA)

Irman Forghani

Medical Geneticist (USA)

Vascular Committee

Sherene Shalhub, MD, MPH, FACS

Sherene Shalhub, MD, MPH, FACS

Vascular Committee Co-chair

Vascular Surgeon (USA)

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

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

Vascular Committee Co-chair

Geneticist (UK)

Peter Byers, MD

Peter Byers, MD

Geneticist (USA)

Serwet Demirdas, MD, PhD

Serwet Demirdas, MD, PhD

Clinical Geneticist (The Netherlands)

Michael Frank, MD

Michael Frank, MD

Cardiologist (France)

Xavier Jeunemaitre, MD, PhD

Xavier Jeunemaitre, MD, PhD

Cardiologist (France)

Dr. Diana Johnson

Dr. Diana Johnson

Geneticist (UK)

Lauren Puryear, MS

Lauren Puryear, MS

Genetic Counselor (USA)

Fleur van Dijk, MD, PhD

Fleur van Dijk, MD, PhD

Geneticist (UK)

Nigel Wheeldon, MB, ChB MD, FRCP, FESC

Nigel Wheeldon, MB, ChB MD, FRCP, FESC

Cardiologist (UK)

Rarer Types Committee

Fransiska Malfait, MD, PhD

Fransiska Malfait, MD, PhD

Rarer Types Committee Chair

Geneticist/Rheumatologist (Belgium)

Serwet Demirdas, MD, PhD

Serwet Demirdas, MD, PhD

Fleur van Dijk, MD, PhD

Fleur van Dijk, MD, PhD

Geneticist (UK)

Sylvie Fournel-Gigleux, PhD

Sylvie Fournel-Gigleux, PhD

Geneticist (France)

Cecilia Giunta, PhD

Cecilia Giunta, PhD

Geneticist (Switzerland)

Tomoki Kosho, MD, PhD

Tomoki Kosho, MD, PhD

Geneticist (Japan)

Roberto Mendoza-Londono, MD, MSc, FACMG

Roberto Mendoza-Londono, MD, MSc, FACMG

Geneticist (Canada)

Neeti Ghali, MRCPCH, MD

Neeti Ghali, MRCPCH, MD

Claire Green, MSC

Claire Green, MSC

Genetic Counsellor (UK)

Ines Kapferer-Seebacher

Ines Kapferer-Seebacher

Marianne Rohrbach, MD, PhD

Marianne Rohrbach, MD, PhD

Geneticist (Switzerland)

Johannes Zschocke, MD, PhD

Johannes Zschocke, MD, PhD

Geneticist (Austria)

Caroline Van Mourik

Caroline Van Mourik

Patient Expert (Ehlers-Danlos syndrom Rlksforbund Sverige)

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