Our People

Key Staff

Lara Bloom
President and CEO
Alan Hakim, MA, FRCP
Chief Operations Officer
Fransiska Malfait, MD, PhD
Chief Scientific & Medical Officer
Rob Rubin, CPA
Chief Financial Officer
Stacey Simmonds
Events Director
Erin Simons
Marketing Director
Shani Weber
Community and Advocacy Director
Rebecca Gluck
Community and Education Coordinator
Marisa Bergfield
Diversity and Inclusion Coordinator
Jane Schubart, MBA, MS, PhD
Patient Outcomes Research Advisor
Jack Annable
Graphic Designer
Danielle Hohlier
Development Coordinator
Sinead Waugh
Executive Assistant to President & CEO
Faye Moran
Marketing Coordinator
Charli Baynes
Website Coordinator
Nicolle Quick
Team Coordinator
Deborah Wille
Grants Coordinator
Paul Gardener
EDS ECHO Programs Coordinator
Sacha Aziz
EDS ECHO Events Coordinator
Izabelle Manning
HEDGE Research Coordinator

Board of Directors

Officers

John Zonarich, Esq.
Vice-Chair & Secretary

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)
Hanna Kaz Kaz, BA, MSc, MB
Rheumatologist (UK)
Tomoki Kosho, MD
Geneticist (Japan)
Netali Levi, DClinPsy
Clinical Psychologist (UK)
Brad Tinkle, MD, PhD
Geneticist (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 contact us.

Maggie Buckley
Advocacy Advisor
Sophie Castle-Clarke
Global Policy and Commissioning Advisor
Francie Fitzgerald
Research Associate
Juergen Grunert
European Networks 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 currently have patient experts in all fields and as such are not currently looking for any additional patient experts. Please check back at a future date for any patient expert panel vacancies. 

Lara Bloom
Executive Director, International
The Ehlers-Danlos Society
Britta Bergland
Patient Expert (Sweden)
Maggie Buckley
Advocacy Advisor (USA)
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 (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)