President and CEO
London, UK
Registry and Education Director
London, UK
Chief Scientific & Medical Officer
Ghent, Belgium
Financial Director
Oklahoma, USA
Events Director
Hertfordshire, UK
Marketing Director
North Yorkshire, UK
Community Education Director
Maryland, USA
Donor Relations Director
Oklahoma, USA
Patient Outcomes Research Advisor
Pennsylvania, USA
Senior Graphic Designer
Derbyshire, UK
Editor
Texas, USA
Community Education Coordinator
Michigan, USA
Chief of Staff
Kent, UK
Marketing Coordinator
North Yorkshire, UK
Website & IT Coordinator
Lincolnshire, UK
EDS ECHO Programs Lead Coordinator
London, UK
Events Coordinator
Birmingham, UK
EDS ECHO Programs Coordinator
Conneticut, USA
Research Grants Coordinator
Ohio, USA
Community Engagement Coordinator
Iowa, USA
Design & Communications Manager
Hertfordshire, UK
Center of Excellence Coordinator
Illinois, USA
Research Project Coordinator
UK
Program Coordinator (Centers & Networks of Excellence)
Minnesota, USA
Major Grants & Gifts Officer
Ohio, USA
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.
Advocacy Advisor
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.
President and CEO
The Ehlers-Danlos Society
Advocacy Advisor (USA)
Patient Expert (USA)
Patient Expert (Belgium)
Patient Expert (UK)
Patient Expert (USA)
Patient Expert (Germany)
Deutsche Ehlers-Danlos Initiative
Patient Expert (Canada)
Patient Expert (UK)
Dysautonomia Advocate
Patient Expert (Ehlers-Danlos syndrom Rlksforbund Sverige)
Patient Expert
