About us


The Foundation for Rare Diseases was created on February 7, 2012 by decree of the Ministry of Higher Education and Research, as a flagship measure of the « research » axis of the 2nd National Rare Diseases Plan 2011-14.

The Foundation For Rare Diseases has the french legal status of “Scientific Cooperation Foundation”, which is a private non-profit legal person. It is subjected to the laws relating to foundations recognized as being of public utility.

The Foundation is born from the combined wishes of 5 major players involved in the management of rare diseases and research : the « AFM-Téléthon », the « Alliance Maladies Rares », the Inserm, the « Conférence des Directeurs Généraux de Centres Hospitaliers Universitaires » and the « Conférence des Présidents d’Université ». 


The Foundation promotes research projects and scientific excellence, as well as the sharing and dissemination of knowledge in the field of rare diseases. Its main objectives are:

– Coordination of research national players on rare diseases,

– Accessibility to technological platforms and calls for proposals,

– Establishment and monitoring of a national database on rare diseases,

– Support clinical trials set up and connecting academic researchers, diagnostic products and innovative therapies,

– Representing France in European and international projects.

our 5 founding members


It is a patients and relatives organization whose objective is to fight against neuromuscular diseases, which are progressive and severely disabling rare diseases.

To do so, the AFM-Téléthon is pursuing a general interest strategy that benefits to all rare diseases. The significant popular mobilization of the telethon that AFM-Téléthon organizes every first weekend of December has contributed to the recognition of rare diseases as a public health issue and has enabled it to become a major and worldwide player in biomedical research.


Alliance Maladies Rares

Founded in 2000, it is non-profit organization recognized of public utility that federates more than 230 patient associations. It is the spokesperson of patients with rares diseases in France. Its ambition is to raise awareness of rare diseases specificities.

www.alliance-maladies-rares.org (in French)

Institut national de la santé et de la recherche médicale (Inserm)

Founded in 1964, the Inserm is a public institute dedicated to science and technology which operates under the joint authority of the French Ministries of Health and Research. Focusing on biology, biomedical research and human health, its prerogative are going from fundamental research to patient bed. It is the partner of the biggest international institutions involved in scientific challenges and progresses in those fields.


Conférence des Directeurs Généraux de Centres Hospitaliers Universitaires (CHU)

The Conference of General Directors of University Hospitals work for the improvement of patient care in hospitals and operation in university hospitals. Its vocation is to promote and defend the strengths and specificities of university hospitals.

As a think tank for university hospitals and a force for proposals and analysis, the Conference promotes initiatives and experimental projects.

The Conference fulfils a duty to inform and alert the supervisory authorities, first and foremost the Hospitalization and Organization Direction, on the conditions of implementation of the health policy in the university hospitals. For the general public, it reports on the contribution of the university hospitals to medical progress and to the improvement of the population’s health. It publicizes their various missions of care, teaching, research and innovation.

www.reseau-chu.org/directeurs-generaux (in French)

Conférence des Présidents d’Université (CPU)

It is a non-profit organization under the French Law of 1901 that reassemble the executive directors of universities, higher education and research establishments in order to bring the voice and values of universities into the public debate. It currently includes about 100 voting members (university presidents, directors of graduate schools, INP, INSA, general administrators) but also associate members.