Despite the significant efforts that have been made in France during last years on rare diseases, current knowledge remains very low. This field of research continuously suffers from a lack of coordination between research groups and public and private partners.

The Foundation is a unique alliance of stakeholders created to promote and support basic and clinical research toward more effective treatments for patients with rare diseases.
Today the Foundation for rare diseases is a key player to find treatments of tomorrow
The Foundation for rare diseases was created within the framework of the 2nd National Rare Diseases Plan 2011-2016 by decree of the Ministry of Higher Education and Research on 7 February 2012. It was born from the joint will of all the institutions involved in the research of rare diseases, and of 5 founding members:
The AFM-Téléthon is an association created by patients and their parents who were suffering from rare genetic diseases
The National Institute of Health and Medical Research is a public scientific institution very much involved in research on rare diseases, supporting fundamental research.
The Rare Diseases Alliance, an officially recognised non-profit organisation, brings together more than 200 associations of patients. It represents almost 2 million patients and about 2000 pathologies
The Conference of General Directors of University Hospital Centers is the Assembly of Managing Directors whose role is to intervene to improve the service provided to the patients.
The Conference of University Presidents brings together leaders of universities, national polytechnic institutes, higher teacher training colleges, large institutions and research centers.
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