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Our results in 2017

In 2017, the French Foundation for Rare Diseases has funded 41 new excellence projects for a direct annual investment in rare disease research of 1.78 million euros. To this direct investment allocated to the best French research teams through 6 calls. Also to be added is the investment by the 7 regional managers of the Foundation who accompany the researchers involved in the development of new drug candidates.

MISSION 1: DECYPHERING RARE DISEASES

 

Select and finance research projects

 

6 CALLS FOR PROJECTS launched (4 calls whose results are known in 2017 and 2 calls whose results will be announced in 2018)

 

15 TECHNOLOGY PLATFORMS PARTNERS FOR THE BENEFIT OF SCIENTIFIC EXCELLENCE.

 34 PROJECTS GRANTED

To help the diagnosis

  • 1 call for high throughput sequencing projects // 15 projects funded out of 36 submitted

 

To develop new treatments

  • 1 call to create murine models // 12 projects funded out of 29 submitted
  • 1 call for translational & clinical research joint GCS-Hugo // 3 projects funded on 11 submitted
  • 1 call for preclinical research projects: experimental models // 4 projects funded out of 14 submitted

  List of the 41 PROJECTS 2017


Support and advise teams of researchers

  • 22 new therapeutic proofs of principle identified
  • 6 links established between academic research teams and industry.

 

MISSION 2: IMPROVING THE PATIENTS’ LIFE PATH

 

Select and finance research projects

1 CALL FOR PROJECTS

7 PROJECTS SUPPORTED

  • 1 call for research projects in the humanities and social sciences on disability situations related to rare diseases of children and adults.
  • 35 submitted projects
  • 7 funded projects

This call for projects is supported by the National Solidarity Fund for Autonomy (CNSA) and the IRCEM Group Corporate Foundation. This call for proposals aimed to increase knowledge about the specificity and complexity of disability situations in relation to rare diseases of children and adults, with a view to improving the care and treatment of children. accompanying people and their entourage in all aspects of their lives.

 

 

Support and advise teams of researchers

 

The 7 regional managers of the Foundation stimulate and accompany in the field the assembly of research projects in humanities and social sciences by linking researchers in the field (psychologists, sociologists, etc.) with clinicians from rare disease centers (reference centers, sectors) and the concerned patient associations. The role of the Foundation as a link between actors in care and research in the human and social sciences is now unanimously recognized as a determining factor in bringing out of these multidisciplinary projects concrete solutions to the specific problems posed by these rare diseases, the lives of the affected children and concerned adults.

 

In 2017, the Foundation held the Meeting “Rencontres rare”, which aimed to promote in France a health and research policy for people with rare diseases. This conference took place in the presence of the Minister of Solidarities and Health, Agnes Buzyn and the Minister of Higher Education, Research and Innovation, Frederique Vidal, on 20 and 21 November 2017.
To find out more, visit the conference website: program, videos of the sessions, pdf of the posters presented, list of speakers, pdf of the interventions.