Staff and Volunteers

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 Education Director
Maryland, USA
Danielle Hohlier
Campaign Director
Oklahoma, USA
Jane Schubart, MBA, MS, PhD
Patient Outcomes Research Advisor
Pennsylvania, USA
Jack Annable
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 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
Jenny Ho
Fundraising Coordinator
Salt Lake City, USA
Owen Moore
EDS ECHO Programs Coordinator
Conneticut, USA
Oumaima Nehaili
Research Grants Coordinator
Ohio, USA
Lakshmi Sravya Konakanchi
Research and Registry Coordinator
Iowa, USA
Olufunke Femi-Ojo
Collaborations Program Coordinator
Kano, Nigeria
Michelle Jalali
Diversity & Inclusion Coordinator
California, USA
Alliesha Andrews-Prince
Project Support Coordinator
California, USA


Marion Ivaldi
Events Intern

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
Francie Fitzgerald
Research Associate

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)