Fondation Maladies Rares

The “Fondation maladies rares” (Fondation MR) is a newly created structure endorsed by the French Ministry of Research, and set up to federate, facilitate and coordinate research on rare diseases. It is built and organised around six research poles with a clear connection with patients organisations, public hospitals, Universities and industrial partners. Among its main actions, the Fondation maladies rares includes those of the former GIS-Institute for Rare Diseases, dedicated to funding of research projects for gene identification using NGS, creation of models for rare diseases, and screening of molecules with therapeutic potential through unique P2Ps partnerships with technology platforms. The major goals of the Foundation are to organise the national databank for rare diseases, support designing therapeutic trials, boosting research in human and social health, and participate and coordinate European and international rare diseases projects and networks, among which the currently running E-Rare ERA-Net (2010-2014), coordinated by the GIS-Institute for Rare Diseases.

Due to its expertise in facilitating access to research platforms (Next Generation Sequencing, …), federating databases including databases as a repertoire of rare variants identified through NGS, and international cooperation, the foundation will have a clear added value in the project in general and in WP7 in particular. Through its expertises, the Foundation will evaluate the impact of RD-CONNECT tools on the scientific progresses; in particular, it will ensure that the tools developed within the project are adequately designed and permanently follow and adapt to the technological evolution and needs. Besides, due to the expertise of key persons of the foundation in coordinating EU-projects, the foundation will design and propose IP exploitation plans to the partners. Fondation MR will participate in WP 7 (impact, innovation and implementation).