Foundation for Rare Diseases

The Foundation for Rare Diseases (FFRD) was created in 2012 by representatives from Patient Advocacy Organizations, academia and university hospitals. The founding members are the French Muscular Dystrophy Association (‘AFM-Téléthon’), the national Federation of Patients’ Organisations ‘Alliance Maladies Rares’, as well as the French Institute of Health and Medical Research (‘Inserm’) and major Universities and University Hospitals. The Foundation for Rare Disease has the global mission to accelerate research on rare diseases, with three main objectives:
- identify the cause of rare diseases and contribute to the advancement of diagnosis,
- assist in the development of new treatments,
- improve the daily lives of people affected by rare disease and their relatives.
The Foundation acts as a federative hub to fund research and accelerate scientific, clinical and social innovation by stimulating cross-sector cooperation towards effective healthcare to the benefit of rare diseases patients. Its active financial support spans from biomedical sciences to social sciences and humanities, through evaluation and ranking by highly selected external experts. Aside funding, the Foundation also provides support to research teams through matchmaking with pharmaceutical and biotech companies and to Patient Advocacy Organizations by helping them structure their scientific research strategy.
With headquarters located in Paris, FFRD also relies on a team of regional field coordinators in direct contact with academic and clinical teams to ensure that priorities are driven by grounded needs.
The Foundation for Rare Disease has become an essential player allowing all rare diseases stakeholders (academic research teams, expert clinicians, patient organizations and industry) to work together toward concrete results to improve the patient journey.
Since its creation, FFRD has funded more than 393 projects and has enabled the identification of more than 100 genes responsible for rare diseases.

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Diagnosing Rare Diseases: from the Clinic to Research and back (FutureLearn)

Discover the role of research, clinical investigation and data sharing in diagnosing rare diseases. Learn about rare diseases diagnosis, genetic testing and diagnostic research. Around 30 million people in Europe are living with a rare genetic disease (a disease that affects less than 1 in 2,000 [...]