Our People

Key Staff

Lara Bloom
Executive Director, International
Shane Robinson
Executive Director, USA
Jessica Adelman
Program Manager

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)
Raymond Dalgleish, PhD
Geneticist (Leicester, UK)
Cecilia Giunta, PhD
Geneticist (Switzerland)
Alan Hakim, MA, FRCP
Rheumatologist (UK)
Tomoki Kosho, MD
Geneticist (Japan)
Cathy Raggio
Orthopaedics (USA)
Brad Tinkle, MD, PhD
Geneticist (USA)

Volunteer Leaders

If you are interested in volunteering, click here.

You can also contact EDS HQ at 410-670-7577 or email us, info@ehlers-danlos.com.

Maggie Buckley
Advocacy Advisor
Juergen Grunert
European Networks Coordinator
Sarah Jo Ritchie
Volunteer Coordinator
Laura Sylvester
Education Advisor
Tania Tirraoro
UK & European Advisor
Shani Weber
Local Groups and Outreach Liaison
Helpline Advisor

Patient Expert Panel

Would you like to become a Patient Expert? Becoming a patient expert means representing the full spectrum of the patients affected by The Ehlers-Danlos syndromes and hypermobility spectrum disorders. Training will be given and you will be expected to take part in meetings, conference calls and publications where 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 and we are currently recruiting for a number of our groups.

Please complete this form to apply

Lara Bloom
Executive Director, International
The Ehlers-Danlos Society
Britta Bergland
Geneticist (USA)
Hylke Bosma
Patient Expert (The Netherlands)
Maggie Buckley
Advocacy Advisor
Charissa Frank
Patient Expert (Belgium)
Angela Hunter
Patient Expert - UK
Lynn Sanders
Patient Expert (USA)
Christina Schwarting
Patient Expert (Germany)
Deutsche Ehlers-Danlos Initiative
Sandy Smeenk
Patient Expert (Canada)
Lauren Stiles
Dysautonomia Advocate
Caroline Van Mourik
Patient Expert (Ehlers-Danlos syndrom Rlksforbund Sverige)
Nicoleta Woinarosky
Health Resources Consultant (Canada)