Staff and Volunteers

Key Staff

Lara Bloom
President and CEO
London, UK
Alan Hakim, MA, FRCP
Registry and 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 Education Director
Maryland, USA
Danielle Hohlier
Donor Relations Director
Oklahoma, USA
Jane Schubart, MBA, MS, PhD
Patient Outcomes Research Advisor
Pennsylvania, USA
Jack Annable
Senior Graphic Designer
Derbyshire, UK
Mark Martino
Texas, USA
Rebecca Gluck
Community Education Coordinator
Michigan, USA
Sinead Waugh
Chief of Staff
Kent, UK
Faye Moran
Marketing Coordinator
North Yorkshire, UK
Charli Peck
Website & IT Coordinator
Lincolnshire, UK
Paul Gardener
EDS ECHO Programs Lead Coordinator
London, UK
Sacha Aziz
Events Coordinator
Birmingham, UK
Owen Moore
EDS ECHO Programs Coordinator
Conneticut, USA
Oumaima Nehaili
Research Grants Coordinator
Ohio, USA
Scarlett Eagle
Community Engagement Coordinator
Iowa, USA
Joe Holdsworth
Design & Communications Manager
Hertfordshire, UK
Isabelle Brock
Center of Excellence Coordinator
Illinois, USA
Beth Pillow-Edwards
Research Project Coordinator
Amelia Rinker
Program Coordinator (Centers & Networks of Excellence)
Minnesota, USA
Ryan Belcher
Major Grants & Gifts Officer
Ohio, USA
Rosie Harper
HR & Operations Coordinator
Hertfordshire, UK

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.

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
President and CEO
The Ehlers-Danlos Society
Maggie Buckley
Advocacy Advisor (USA)
Judy Eloed
Patient Expert (USA)
Charissa Frank
Patient Expert (Belgium)
Angela Hunter
Patient Expert (UK)
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
Caroline Van Mourik
Patient Expert (Ehlers-Danlos syndrom Rlksforbund Sverige)
Susan Chalela
Patient Expert
Megan Karanfil
Patient Expert (USA)
Lorna Ryan
Patient Expert (UK)