I fight for the research project “HOPE” on Ehlers-Danlos Syndrome …
If you would like to learn about EDS programs in other countries see this article:
“Hello, I’m Valerie, I’m 44 years old and severely affected by Ehlers-Danlos syndrome. A little more than a year ago I decided with the help of my husband to create an association to find funding for a research project on Ehlers-Danlos syndrome, to know how to manage EDS in everyday life, to help orient people waiting for a diagnosis, to inform, to explain what Ehlers-Danlos is, to give all the little “tricks” to soften everyday life, laughter and cry together, intervene in proceedings concerned administrations.
Numerous people joined our magnificent fight, EDS has no boundaries then all together we get there, the project named “HOPE” is all for the Ehlers-Danlos syndrome remains more orphan name, for future generations”
The HOPE progam is promoting research for Ehlers-Danlos syndrome