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The Genesis

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.

The French Foundation for Rare Diseases is a foundation for scientific cooperation, a private non-profit organisation with a mission of public interest – to accelerate research on the ensemble of rare diseases.

Our 5 founders


The French Muscular Dystrophy Association (AFM-Téléthon) has been driving and carrying the fight against rare diseases for many years now, thanks to the exceptional mobilization of the Téléthon. From recognition of rare diseases as a public health concern to emergence of innovative therapies, the AFM-Téléthon has played and continues to play a major role.

"To cure, we must implement a joint strategy and mode of action. Acting together to speed up the fight against rare diseases as a whole – this is the strategy that our association has always defended. It is for this reason that we have been a driving force for the emergence of a national-level public policy and also so that rare diseases can have "their own" foundation. The French Foundation for rare diseases is an indispensable tool to ensure that these diseases remain a public health priority. This collective strategy is in fact the only one that can enable us to reach our objective – to cure! Today, new therapeutic options are emerging, there is a multiplication of clinical trials and laboratories are manufacturing the first drugs. More than ever, this collective struggle must continue. This is urgent: more than 90% of rare diseases have no treatment."

Visit our Youtube channel to see her testimonial click here.

Laurence Tiennot-Herment, AFM President

The French Rare Diseases Alliance, created in 2000, is an officially recognised non-profit association which unites more than 200 patients organisations.

The French national institute of health and medical research (INSERM)

The Inserm is a public scientific and technological institution, under the dual aegis of the Ministry for Higher Education and Research and the Ministry of Health. The Inserm is very heavily involved in research on rare diseases, supporting both basic and clinical research.


The Conference of Managing Directors of Regional and University Hospitals is the assembly of hospital managing directors, whose role is to improve the service provided to patients and the functioning of university hospitals. Its involvement in the French Foundation for rare diseases, through the position of 8 university hospitals linked to their corresponding universities, contributes widely to the development of the unifying missions undertaken by the Foundation.


The Conference of University Presidents brings together the presidents of universities, national polytechnic institutes, ecoles normales supérieures.