AFSED About us


created in February 1997 has the following objectives : – Help for the patients and their family, information, and direction – Make the disorder known – Support EDS medical research – Newsletter, documents,
– — E-mail ,and phone answers – Therapy Education for patients “PrEduSED” – Following conferences and events on EDS
– Annual meeting for medical information – Event organizing and providing funds for medical research

The AFSED belongs to the ALLIANCE-MALADIES-RARES (RARE DISEASES ALLIANCE) (which brings together rare disease organizations in France)
– to EURORDIS (brings together many rare disease associations in Europe)
– to FILIERES (brings together Reference Centers, competence centers and patient association in order to put together diagnostic and care means)
– to FAVAmulti, OSCAR,métaboliqueG2M,Head and neck
– to ERN (European Reference Networks European equivalent toFilières) VASCernandReCOnnet

Headquarters AFSED : 67, rue Jules Lecesne 76600 LE HAVRE
President : Marie-Noelle GAVEAU 67, rue Jules Lecesne 76600 LE HAVRE tél.
email :
Vice-president, secretary : Zakia Beghdad 33, rue Marius Jacotot 92800 PUTEAUX
Scientific Committee : Président Pr X. Jeunemaitre Paris
Reference Centers _________________________________________________________________________________
Vascular EDS : Centre National des Maladies Vasculaires Rares Hôpital Européen Georges Pompidou 20, rue Leblanc (7ème étage, Pole B) 75908 PARIS cedex 15 Pr Xavier Jeunemaitre tél.
Other types EDS : Centre de référence des syndromes d’Ehlers-Danlos non vasculaires
Hôpital Raymond Poincaré 104, Boulevard Raymond Poincaré 92380 Garches
Dr Karelle Bénistan
Non vascular EDS children : Hôpital Necker-Enfants-Malades 149, rue de Sèvres 75015 PARIS Pr Valérie CORMIER-DAIRE tél. :