Our People

Key Staff

Lara Bloom
Executive Director, International
Shane Robinson
Executive Director, USA
Jessica Adelman
Social Media and Communications Manager
Mark Martino
Creative Consultant
Shani Weber
Local Groups and Outreach Liaison
Helpline Advisor

Board of Directors



Medical and Scientific Board

Fransiska Malfait, MD, PhD
Geneticist/Rheumatologist (Belgium)
Clair Francomano, MD, PhD
Vice Chair
Geneticist (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)
Brad Tinkle, MD, PhD
Geneticist (USA)

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
Laura Sylvester
Education Advisor

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)
Valérie Gisclard
Patient Expert (France)
Angela Hunter
Patient Expert - UK
Edith Joan Langner, MD
Patient Expert
Rochelle Mclemore
Patient Expert
Lynn Sanders
Patient Expert (USA)
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)
Nicoleta Woinarosky
Health Resources Consultant (Canada)