Our People

Key Staff

Lara Bloom
President and CEO
London, UK
Alan Hakim, MA, FRCP
Education Director
London, UK
Fransiska Malfait, MD, PhD
Chief Scientific & Medical Officer
Ghent, Belgium
Eric Alley
Financial Director
Oklahoma, USA
Stacey Simmonds
Events Director
Hertfordshire, UK
Erin Simons
Marketing Director
North Yorkshire, UK
Shani Weber
Community and Advocacy Director
Maryland, USA
Rebecca Gluck
Community and Education Coordinator
Michigan, USA
Marisa Bergfield
Diversity and Inclusion Coordinator
Virginia, USA
Jane Schubart, MBA, MS, PhD
Patient Outcomes Research Advisor
Pennsylvania, USA
Jack Annable
Graphic Designer
Derbyshire, UK
Mark Martino
Editor
Texas, USA
Danielle Hohlier
Campaign Director
Oklahoma, USA
Sinead Waugh
Chief of Staff
Kent, UK
Faye Moran
Marketing Coordinator
North Yorkshire, UK
Charli Baynes
Website & IT Coordinator
Lincolnshire, UK
Nicolle Quick
Team Coordinator
California, USA
Paul Gardener
EDS ECHO Programs Lead Coordinator
London, UK
Sacha Aziz
Events Coordinator
Birmingham, UK
Izabelle Manning
Registry & Research Coordinator
Indiana, USA
Jenny Ho
Fundraising Coordinator
Salt Lake City, USA
Owen Moore
EDS ECHO Programs Coordinator
Conneticut, USA

Board of Directors

Officers

John Zonarich, Esq.
Vice-Chair & Secretary
Rob Rubin, CPA
Treasurer

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)
Jennifer Tjernagel
Data and Registry Expert (USA)

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)