The French Foundation for Rare Diseases was created as a flagship measure of the Second National Plan for Rare Diseases, 2011-2016, by decree of the Ministry for Higher Education and Research on 7 February 2012.
It stems from the joint wish of all stakeholders involved in research and healthcare of rare diseases and in particular its 5 founding members: AFM-Telethon, INSERM, French Rare Diseases Alliance (Alliance Maladies Rares), the Conference of Managing Directors of Regional and University Hospitals and the Conference of University Presidents.