The French foundation for rare diseases, a new structure of coordination by Audrey Tranchand, Paris representative for the French Foundation of Rare diseases
In her presentation Audrey Tranchand explained the aim of the French Foundation of Rare diseases and how it operates. The foundation was created to promote and support basic and clinical research towards more effective health care for patients affected with rare diseases.
As discussed earlier, the creation of the foundation was one of the main objectives of the 2nd National Rare Diseases plan in 2011. It was created by the ministry of health and ministry of research to develop research in the field of rare disease, focussing on new diagnostic tools and new treatments in order to improve the quality of life of patients and their families.
The foundation of rare disease is created by five parties: Inserm (French National Institute of Health and Medical Research); the Board of Directors of University Hospital Centres and Assembly of Presidents of major French Universities and by two patient organizations - Association Française contre les Myopathies (AFM) and Alliance Maladies Rares (French patient’s federation).
Their mission is to Promote Research on rare diseases which is translated into six major areas of intervention.
1. Creating links between research and healthcare professionals
2. Improving the access to resources
3. Promoting clinical and biological data collection
4. Supporting early stages of clinical trials
5. Encouraging research on social and human sciences
6. Contributing to national and international policies