The AFSED
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
– to RARE DISEASES INFO SERVICEhttps://www.maladiesraresinfo.org/ tel.: 01.56.53.81.36Headquarters AFSED : 67, rue Jules Lecesne 76600 LE HAVRE
President : Marie-Noelle GAVEAU 67, rue Jules Lecesne 76600 LE HAVRE tél. 02.35.43.46.77
email : contact@afsed.com
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 www.maladiesvasculairesrares.fr tél. 01.56.09.50.40
__________________________________________________________________________________
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 01.47.10.44.28 secretariat.sed@aphp.fr
__________________________________________________________________________________
Non vascular EDS children : Hôpital Necker-Enfants-Malades 149, rue de Sèvres 75015 PARIS Pr Valérie CORMIER-DAIRE tél. : 01.42.19.27.13
