Alliance maladies rares

Alliance Maladies Rares is a French organisation that brings together more than 240 associations to represent the interests of the estimated three million people affected by rare diseases. Its work focuses on mutual support, information and advocacy, helping member associations strengthen their ability to act and make their concerns heard. The Alliance also supports collaboration among organisations and encourages engagement across France and internationally.

Its website provides resources including activity reports, conference proceedings, reference documents and surveys. It organises regional meetings, training, conferences and other events, including activities for Rare Disease Day and the Rare Disease March in Paris, a campaign described as having continued for more than 25 years. The organisation also promotes cooperation through the Rare Disease Platform and invites people to become volunteers, partners or donors. Visitors can subscribe to its newsletter for updates. Based in Paris, Alliance Maladies Rares offers a shared platform for associations working to improve recognition, support and representation for people affected by rare diseases.