Find here the specialist centres of the French non-vascular EDS network, to help you find your way in your care pathway.
Non-vascular Ehlers-Danlos syndromes (nvEDS) are part of the OSCAR ↗ rare disease health network. The network includes Rare Disease Reference Centres (CRMR) and Rare Disease Expert Centres (CCMR).
Centres with specialist expertise, which also take part in coordinating the network, research, teaching and training.
Facilities providing specialist care closer to home, working with the reference centres.
Being listed in this directory shows membership of the network identified by the OSCAR network and is not a medical recommendation. Waiting times, catchment areas, capacity and appointment arrangements can change quickly: always check the information with the centre before taking any steps.
Information checked on 27/08/2026 · list of centres compared with the official OSCAR directory ↗ on 11/10/2026.
Vascular EDS is not covered by this network but by the rare vascular disease network FAVA-Multi, which has its own expert centres. Talk to your doctor about it quickly. In case of sudden, severe pain, call the emergency services (15 or 112 in France).
Each centre has its own arrangements, but the process usually follows the same steps.
The request usually goes through your GP or a specialist, who writes a letter explaining your symptoms and the reason for the request.
Referral letter, consultation and test reports, treatments, family history: gather them all in a single submission.
Depending on your age and where you live. Check its procedure (letter, email, online platform) on its card below or on its OSCAR page.
Note the date you sent it. Waiting times can be long: you can quite politely follow up with the centre after a few months.
You don’t need an appointment at a centre to receive care: your GP and other healthcare professionals can already follow you. Prepare your consultations too, to make the most of them.
Click on a city on the map or use the filters to show the centres relevant to you.
Hôpital Raymond-Poincaré (AP-HP)
Patients: Adults
Hôpital Necker-Enfants malades (AP-HP)
Patients: Children / teenagers
Be sure to check the procedure before making any request.
See the OSCAR page ↗CHU Estaing
Patients: Children and adults
SSR Les Capucins
Patients: Children / teenagers
CHU Caen, genetics department
Patients: Adults
CHU Caen, paediatric orthopaedic surgery
Patients: Children / teenagers
Hôpital Pierre Swynghedauw (CHU de Lille)
Patients: Adults
Centre médico-chirurgical de réadaptation des Massues (French Red Cross)
Patients: Adults
Hôpital de la Timone (AP-HM), internal medicine
Patients: Children and adults
Be sure to check the procedure before making any request.
See the OSCAR page ↗CHU Montpellier — Hôpital Arnaud de Villeneuve
Patients: Children and adults
Be sure to check the procedure before making any request.
See the OSCAR page ↗CHU Nancy — Hôpital de Brabois, internal medicine
Patients: Adults (children / teenagers: to be confirmed)
CH Perpignan — USSAP, PSR Bouffard-Vercelli
Patients: Children and adults
CHU La Milétrie, rheumatology
Patients: Adults
CHU La Milétrie, genetics
Patients: Children / teenagers
Centre Paul Dottin (ASEI), near Toulouse
Patients: Children / teenagers
CHU de La Réunion — Site Sud
Patients: Children and adults
Hôpital Clocheville (CHRU de Tours)
Patients: Children / teenagers
Be sure to check the procedure before making any request.
See the OSCAR page ↗
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