ABOUT US

The Foundation For Rare Diseases

The genesis

A foundation that brings together the players in research and care

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

The Foundation For Rare Diseases is a scientific cooperation foundation, a non-profit legal entity under private law. It is subject to the rules governing foundations recognized as being of public utility. It was born from the joint will of all the actors involved in the research and care of rare diseases, and more particularly its 5 founding members.

AFM TELETHON
Rare Diseases Alliance
Inserm
CHU France
CPU

The Foundation is a real link between all the actors in the field of rare diseases.

A coordinator and accelerator of research on all rare diseases

The Foundation aims to promote research projects and scientific excellence as well as the sharing and dissemination of knowledge in the field of rare diseases. It pursues the following objectives in particular:

the coordination of national actors in research on rare diseases,

Accessibility to technology platforms and calls for projects,

the setting up and monitoring of a national database on rare diseases,

support for the implementation of clinical trials and the bringing together of the public research sector, diagnostic products and innovative therapies,

representing France in the implementation of European and international projects.

 

Our 5 founding members

The AFM Telethon

It is an association of patients and parents of patients whose objective is to overcome neuromuscular diseases, rare, progressive and severely disabling diseases.

To this end, it pursues a strategy of general interest that benefits all rare diseases. The great popular mobilization of the Telethon, which it 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 player in biomedical research in France and throughout the world.

Mrs. Laurence Tiennot-Herment, President of AFM-Telethon

"In order to cure, we need a collective strategy and action. Acting collectively to advance the fight against all rare diseases more quickly is the strategy that our association has always defended. This is why we have been the driving force behind the emergence of a national public policy, but also for rare diseases to have "their" foundation.

The Rare Disease Foundation is one of the indispensable tools to ensure that these diseases remain a public health priority. This collective strategy is, in fact, the only one that will allow us to reach our objective: to cure! Today, new therapeutic approaches are emerging, clinical trials are multiplying and the first drugs are coming out of the laboratories. More than ever, the collective fight must continue. It is urgent: more than 90% of rare diseases have no curative treatment.

The Rare Diseases Alliance

Created in 2000, it is an association recognized as being of public utility, which today brings together and federates over 230 patient associations. As the spokesperson for people affected by rare diseases in France, the Alliance Maladies Rares aims to contribute to raising awareness of the specificities of rare diseases.

The National Institute of Health and Medical Research (Inserm)

It is a public establishment created in 1964, with a scientific and technological character, placed under the double supervision of the Ministry of Health and the Ministry of Research. Dedicated to biological, medical and human health research, it is positioned along the entire path from the research laboratory to the patient's bed. On the international scene, it is the partner of the largest institutions involved in the challenges and scientific progress of these fields.

The Conference of General Directors of University Hospitals (CHU)

It is a public establishment created in 1964, with a scientific and technological character, placed under the double supervision of the Ministry of Health and the Ministry of Research. Dedicated to biological, medical and human health research, it is positioned along the entire path from the research laboratory to the patient's bed. On the international scene, it is the partner of the largest institutions involved in the challenges and scientific progress of these fields.

The Conference of University Presidents (CPU)

It is an association under the French law of 1901 that brings together the executive directors of universities and 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.