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Our results in 2016

With its 4 years of experience, the Foundation is pursuing and developing its actions in 2016.

The Foundation is planning to deploy its scientifi c policy of calls for projects and strengthen its role in the acceleration of projects aiming to accelerate therapeutic development of drug candidates, always with the main objectives to improve diagnosis and care of rare diseases and to continue building the hope of a treatment for the 3 million people suffering from a rare disease in France.



Select and finance research projects


6 CALL FOR PROJECTS launched (4 calls for projects whose results are known in 2016 and 2 calls for projects whose results were announced in 2017).




To help the diagnosis

  • 2 GenOmics calls for projects: high speed sequencing // 29 projects funded out of 69 submitted


 To develop new treatments

  • 1 call for animal models development projects // 9 projects funded out of 14 submitted
  • 1 call for projects for the screening of molecules with therapeutic potential // 4 projects funded out of 11 submitted


Facilitate access to innovative technologies



High throughput sequencing

  • Institute of Genomics / National Genotyping Center, CEA, Evry.
  • Génomique Imagine – Institute of Genetic Diseases, Paris.
  • Biochips and Sequencing, IGBMC Strasbourg.
  • Integragen, Evry.
  • Biogenous Genomics, Nantes.
  • Eurofins Genomics, Aarhus, Denmark. 

Creation of animal models

  • Phenomin infrastructure: Mouse Clinic Institute, Strasbourg.
  • Phenomin infrastructure: CIPHE (ImmunoPHEnogenomics Center), Marseille.
  • National TEFOR infrastructure (Rat Transgenesis and Immunophenomics TRIP): AMAGEN (Aquatic Models and GENETICS Animals), Gif-sur-Yvette.
  • TEFOR national infrastructure: TRANSGENESIS, Nantes.
  • Biological Resources Center (CRB) Xénopes, Rennes.
  • Institute of Genomics / National Genotyping Center, CEA, Evry 

High throughput screening of molecules with therapeutic potential

  • Integrative Biology Chemistry Platform of Strasbourg (PCBIS), UMS 3286 CNRS-UdS.
  • Scanning Platform for Bio-Activated Molecules (CMBA), CEA Grenoble.
  • High throughput screening and combinatorial chemistry platform, CEA Saclay.
  • ARIADNE platform, U1177, Institut Pasteur, Lille.


Support and advise teams of researchers

  • 18 new therapeutic proofs of principle identified
  • 6 links between academic research teams and industrialists





Select and finance research projects




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


  • 20 submitted projects
  • 2 committees assembled and 29 experts mobilized to participate in the evaluation process of the 20 submitted 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 agents of the Foundation stimulate and accompany in the field the assembly of research projects in Humanities and Social Sciences by promoting the linking of researchers in the field (psychologists, sociologists, etc.) with clinicians of rare disease centers (reference centers, sectors) and the patient associations concerned. 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 children and adults concerned.


In 2016, the Foundation organized the first research symposium in humanities and social sciences in the context of rare diseases to highlight the results obtained during our calls for projects in the humanities and social sciences and to facilitate the sharing of experience. This first conference took place on October 20, 2016 at the Collège de France, Paris 5th.

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.