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Improving the patients’ life path

The French Foundation for Rare Diseases contributes to the identification of each disease, to the advent of new possible treatments and to the improvement of the life pathway of sick people.

The Foundation is the onvly French structure that promotes the research on the whole rare diseases. The Foundation finances, coordinates and supports the best projects of research and gives the different needed ressources to the actors(academics, industrials and institutions) to work together.

The seven regional managers of the Foundation detect and support the development of therapeutical proof-of-concept to accelerate the development of treatment candidates, related to the research Technology Transfer Offices) and in collaboration with industrials.

Since its creation, the French Foundation for Rare Diseases has supported research projects focusing on the study of the experiences of patients and their families, in order to analyze the consequences of a rare disease at the individual and societal levels and to propose improvements to their daily lives as well as improved care options.

Within the framework of this research programme, the FFRD acts to bring together and create multidisciplinary teams: clinicians, researchers in humanities and social sciences and members of patients organisations. It thus encourages these players to examine together the consequences of the restriction of activity in the life of the person affected by rare disease and to analyze care practices.

Our ambition

  • Facilitating the patients’ life path
  • Preventing the social and professional isolation of people affected by rare diseases

Our actions

  • Selecting and funding research projects
  • Placing patients at the heart of research programmes
  • Creating a link between patients organisations, clinicans and researchers

You’ll find the description of our supported project here.