In order to bring rare diseases out of oblivion, mobilize scientists, general practitioners and the public authorities, AFM has sought to reinforce patients’ representation. It has initiated and organised the grouping of several structures (Alliance Maladies Rares - Eurordis – Allo-Gènes – Orphanet – Maladies Rares Info Service - Institut des Maladies Rares ) on the same site to create Plateforme Maladies Rares (Rare Diseases Platform ).
Its objectives are to increase the visibility and the legitimacy of structures acting in the field of genetic and rare diseases in order to create and develop new services for patients and health professionals.
The Platform’s services :-Need someone to talk to, some information? Call « Maladies Rares Info Service » (Rare Diseases Info Service) on 0 810 63 19 20 (France) or (33) 1 56 53 81 36 (overseas)
-A meeting place and information centre: meeting rooms, offices and logistic ressources are available (Alliance Maladies Rares)
-An Internet database (Orphanet)
-A network of European contributors (Eurordis)
-Information forums on various topics and training for the associations (Alliance maladies rares)
-Free association web hosting(Orphanet)
-The organisation of national and European conferences (Eurordis and Alliance Maladies Rares).
Address : Plateforme Maladies Rares, Hôpital Broussais
102, rue Didot-F-75014 PARIS
Plateforme Maladies Rares ('Rare Diseases Platform') (In French)
This site presents all the services of the Rare Diseases Platform, as well as the structures which are part of it (Alliance Maladies Rares, Allo-Gènes, Eurordis, Orphanet).
Alliance Maladies Rares (In French)
This site provides information in French on each of its member associations. It also showcases the projects, initiatives and actions undertaken by Alliance Maladies Rares and offers up-to-date information on rare diseases.
Eurordis (In French)
A coalition of associations jointly founded by AFM to promote the development of European regulations on rare disorders and orphan drugs. On its English and French site, Eurordis provides information on its member associations, European regulations and institutions.
Orphanet (In English)
Database on rare diseases and orphan drugs (information on the disease, combinations of diseases, consultations in France, etc); search by disease name (you can enter the name of the disease, even incomplete), diagnostic laboratories, clinical trials, research programs, consultations, associations, professionals (by name and specialty), drugs.
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