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Fondation maladies rares


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Professeur Daniel Scherman

Fondation Maladies Rares

Plateforme maladies rares

96 rue Didot

75014 Paris

Tel :  + 33 (0)1 58 14 22 81



The “Fondation maladies rares” is a unique alliance of stakeholders created to promote and support basic and clinical research towards more effective health care for patients affected with rare diseases.

Despite the significant efforts that have been made in France during last years in order to promote research on rare diseases current knowledge on rare diseases remains very heterogeneous. This field of research continuously suffers from a lack of coordination between research groups and of interactions between public and private partners. 

Missions & objectives

In this context, discussions initiated by the patients organisations together with institutional partners, have led to the creation of a "Fondation maladies rares" so that patients can reap the benefits of research, and keep France at the forefront of science at international level.

Based on the GIS-Institute for Rare Diseases, the creation of the “Fondation maladies rares” was one of the main goals of the 2nd National Plan for Rare Diseases (2011-2014) and the main objective of the research axis. It was established by five major co-founders,: Association Française contre les Myopathies (AFM), Alliance Maladies Rares (French patient’s federation), Inserm (French National Institute of Health and Medical Research), Board of Directors of University Hospital Centres and Assembly of Presidents of major French Universities. These founders are supported by distinguished rare diseases experts and health policy makers.

Actions & services

The aim of the Foundation is to promote synergies and to associate capacities of its members and partners in order to support the development of new therapies. 

The “Fondation maladies rares” aims at making available a "continuum" of expertise for the development of research on rare diseases, including basic and clinical science, approaches for clinical and biological data collection, supports to early phases of clinical trials and international cooperation. 

The “Fondation maladies rares” will act as a strategic centre. It will bring financial support to innovative projects and will stimulate and federate networks between researchers and physicians.

These objectives cannot be achieved without a close cooperation of all actors involved in Rare Diseases, and the necessary development of partnerships with industries already engaged in Rare Diseases towards improvement of the quality of patient’s care. Located in the heart of the Platform for Rare Diseases, the “Fondation maladies rares”, through its public, associative and private partnerships, is actively involved in keeping excellence in research on Rare Diseases and maintaining this field at a high priority level for the best benefit of patients.