Recent meetings
No recorded meetings with EU commissioners.
Mission & Goals
The Ehlers-Danlos Society’s mission is dedicated to advancing and accelerating research and education in Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). We support the development of effective and equitable EDS and HSD therapies and work collaboratively to improve the lives of individuals affected by EDS and HSD. Our vision is to create a world in which each person living with the Ehlers-Danlos syndromes and hypermobility spectrum disorders has the right treatment and care at the right time for their specific needs.
EU Legislative Interests
Working in the Rare 2030 Work and member of the Stakeholder Network for Rare Diseases EU Health Policy, being part of Eurordis and Rare Disease International. Working with European colleagues on collaborative r esearch and education programs.
Communication Activities
Working in the Rare 2030 Work and member of the Stakeholder Network for Rare Diseases EU Health Policy, being part of Eurordis and Rare Disease International. Working with European colleagues on collaborative research and education programs.
Interests Represented
Does not represent commercial interests
Member Of
Eurordis, Rare Disease International, Rare Disease UK, Genetic Alliance UK, Fundraising Register www.ehlers-danlos.com - scrolling icons at the bottom of the page for links to organisations. The World Health Assembly (WHA) IAPO
Organisation Members
https://www.ehlers-danlos.com/affiliates-and-support-groups/ https://www.ehlers-danlos.com/eds-hsd-global-alliance/