La recherche

Des progrès significatifs ont été accomplis dans la recherche sur les maladies rares, cependant, des besoins importants restent non couverts empêchant d’apporter des réponses adaptées aux attentes des malades et de leurs familles. La Fondation maladies rares accompagne et finance la recherche en complémentarité des financements existants.


Mise à jour le 29.07.2015


The French Foundation for rare diseases (Fondation maladies rares) is a unique cooperative framework dedicated to rare diseases research. Co-founded by University Hospitals, Research organisations and Patients’ organisations, it acts as a strategic hub to coordinate, federate and fund rare diseases research.


Despite the significant efforts that were made in France over the last years in order to promote research, current knowledge on rare diseases remains very heterogeneous. Rare diseases research suffers from the scattering of patients, research groups and resources, as well as from the lack of interactions between public and private partners. Flagship of the second National Rare Diseases Plan, the French Foundation for rare diseases is a private structure founded by the Inserm (French National Institute of Health and Medical research), The French Muscular Dystrophy Association (AFM-Téléthon), Alliance Maladies Rares (National Federation of Patients’ organizations) and the Boards of Directors of French major Hospital Centres and Universities.


With a team located at the heart of the French national Platform for Rare Diseases, opened to the international scene and completed by seven regional coordinators, the Foundation is actively involved in promoting research excellence, via new synergies and a continuum of expertise. Its active support spans from basic, translational and clinical sciences to social and human research towards effective health care for patients affected by rare diseases. 

Priorities are driven by grounded needs and integrated into a national strategy with an international perspective. The French Foundation for rare diseases brings financial support to innovative projects and stimulates cross-sector cooperation to accelerate scientific, medical and social innovations to the patients’ benefit.

Its regional commitment facilitates the assessment of the landscape and the development of rare diseases community networks and targeted partnerships to optimize resources. With this wealth of actions, the Foundation contributes to national informed public health and research policies and to the promotion of international cooperation, engaging us in a new model of health and society.


Announcement of the consortium granted funding by the French Foundation for rare diseases and TWAS :

Scientific symposium “Consanguinity and hereditary rare diseases” in Tunis – 22-27 September 2014

To increase awareness on the importance of studying rare diseases in developing countries, especially in the Mediterranean and the Middle East regions, a scientific symposium will take place in Tunis, from 22 to 27 September 2014

This meeting is supported by the French Foundation for rare diseases (Fondation maladies rares) and TWAS (The World Academy of Sciences).

The symposium will include keynote speeches on cutting edge strategies for rare diseases investigation in consanguineous populations. It will also include round tables on the challenges encountered in rare diseases investigation in the region and perspectives for collaboration in this field. In addition, hands-on training will be organised on bioinformatics and statistical analysis of data generated using high throughput genotyping and next generation sequencing technologies.

This event is the opportunity to exchange information and share expertise. It is intended to have not only a scientific and educational dimension but it will also be the occasion to strengthen existing collaborations, which are mainly bilateral, and to create a multidisciplinary regional network on rare diseases investigation.

Contact: Dr Sonia Abdelhak - nt/snr/ruetsap//kahledba/ainos



Results of first joint call of the French Foundation for rare diseases and the World Academy of Sciences

The French Foundation for rare diseases (Fondation maladies rares) and The World Academy of Sciences (TWAS) are pleased to announce the results of their first joint programme dedicated to international cooperation in the field of rare diseases research.

90 teams from 17 different countries worked together on 19 international collaboration proposals dedicated to rare diseases.

The selected 2014 initiative, granted funding by the French Foundation for rare diseases and TWAS, was submitted by Dr Sonia Abdelhak (Tunisia), on behalf of a consortium involving the Institut Pasteur of Tunis (Tunisia), the Institut Pasteur of Paris and the Collège de France, the Institut Pasteur of Maroc (Morocco), the Medicine University of Alger 1 (Algeria), the National Centre of Medical Research (Libya) and Nouakchott University (Mauritania), who will be organising an international symposium on "Consanguinity and hereditary rare diseases: challenges and perspectives in post genomics".

Please check out for coming details on our respective websites. Congratulations to the successful applicants !

The French Foundation for rare diseases and the World Academy of Sciences announce their first joint call for rare diseases research

On the 1st of October 2013, The French Foundation for rare diseases (Fondation maladies rares) and The World Academy of Sciences (TWAS) are opening a joint programme to support collaborative initiatives on rare diseases research.
Under the first phase of this programme, researchers from the Mediterranean area (North Africa and the wider Middle Eastern region) are encouraged to initiate and/or strengthen cross-national cooperation in the field of rare diseases. Co-organization of collaborative events (conference, workshop, training course…) with French research teams is encouraged. The French Foundation for rare diseases can assist applicants from eligible countries in the identification of relevant French scientists and professionals. 

Eligible countries:
Afghanistan, Algeria, Bahrain, Egypt, Iran, Iraq, Jordan, Kuwait, Lebanon, Libya, Morocco, Oman, Palestine, Pakistan, Qatar, Saudi Arabia, Syria, Tunisia, Turkey, United Arab Emirates, Yemen. 


Roseline Favresse, in charge of international institutional affairs