Our People

Key Staff

Lara Bloom
Executive Director, International
Shane Robinson
Executive Director, USA
Alan Hakim, MA, FRCP
Education Director
Peter Cohl
Communications Director
Carissa L. Hocevar
Development Director
Angela Ballard
Registry and Research Coordinator
Carol Everson
Administrator
Jessica Adelman
Social Media and Communications Manager
Shani Weber
Local Groups and Outreach Liaison
Helpline Advisor
Mark Martino
Consultant

Board of Directors

Officers

Directors

Medical and Scientific Board

Clair Francomano, MD
Chair
Geneticist (USA)
Fransiska Malfait, MD, PhD
Vice Chair
Geneticist/Rheumatologist (Belgium)
Patrick Agnew, DPM
Podiatrist (USA)
Qasim Aziz, MBBS, FRCP, PhD
Gastroenterology (UK)
Peter Byers, MD
Geneticist (USA)
Marco Castori, MD, PhD
Geneticist (Italy)
Heidi Collins, MD
Physical Medicine and Rehab (USA)
Raymond Dalgleish, PhD
Geneticist (Leicester, UK)
Cecilia Giunta, PhD
Geneticist (Switzerland)
Alan Hakim, MA, FRCP
Rheumatologist (UK)
Fraser C. Henderson, Sr., MD
Neurosurgeon (USA)
Tomoki Kosho, MD
Geneticist (Japan)
Netali Levi, DClinPsy
Clinical Psychologist (UK)
Cathy Raggio
Orthopaedics (USA)
Louise Tofts, MB BS, DCH, MRCPCH, MSpMed, FAFRM, FRACP
Paediatric Rehabilitation Specialist (Australia)

Volunteer Leaders

If you are interested in volunteering, click here.  You can also contact the EDS headquarters at 1-410-670-7577 or email us at info@ehlers-danlos.com.

Maggie Buckley
Advocacy Advisor
Juergen Grunert
European Networks Coordinator
Susan Mills, RN
Helpline Advisor
Sarah Jo Ritchie
Volunteer Coordinator

Patient Expert Panel

Patient experts represent the full spectrum of those affected by the Ehlers-Danlos syndromes and hypermobility spectrum disorders. Training is provided, and experts take part in meetings, conference calls, and publications as appropriate. The patient expert panel is made up of the patient representatives that sit on the EDS International Consortium; there is one expert per group or committee. We are not looking for more patient experts at this time, but if you would like your details to be kept on file, please complete this form to apply.

Lara Bloom
Executive Director, International
The Ehlers-Danlos Society
Britta Bergland
Patient Expert (Sweden)
Maggie Buckley
Advocacy Advisor
Judy Eloed
Patient Expert (USA)
Charissa Frank
Patient Expert (Belgium)
Rachel Friedman, MD
Gynecologist (USA)
Valérie Gisclard
Patient Expert (France)
Angela Hunter
Patient Expert - UK
Edith Joan Langner, MD
Patient Expert
Rochelle Mclemore
Patient Expert
Christina Schwarting
Patient Expert (Germany)
Deutsche Ehlers-Danlos Initiative
Sandy Smeenk
Patient Expert (Canada)
Claire Smith
Patient Expert (UK)
Lauren Stiles
Dysautonomia Advocate
John Sturgell
Patient Expert (USA)
Kaisa Syväoja
Patient Expert
Caroline Van Mourik
Patient Expert (Ehlers-Danlos syndrom Rlksforbund Sverige)
Suzanne Volkman
Patient Expert (USA)