The steering committee convenes every other Thursday and includes a representative from each centre of reference and two representatives for associations and diagnosis and/or research laboratories (elected for a year).

  • CEREVANCE : Dr N. Aladjidi, Pr G. Leverger & Dr T. Leblanc
  • CeReCAI : Pr B. Godeau & Pr M. Michel
  • CR AM : Pr R. Peffault de Latour, Dr F. Sicre de Fontbrune & Dr T. Leblanc
  • CNR MAT : Pr P. Coppo, Pr E. Rondeau & Pr F. Fakhouri
  • CR H : Pr A. Tazi, Dr J. Donadieu & Pr J. Haroche
  • CEREMAST : Pr O. Hermine & Dr MO Chandesris
  • CEREDIH : Pr A. Fischer, Dr N. Mahlaoui & Pr C. Fieschi
  • CR AL : Pr A. Jaccard, Pr F. Bridoux & Dr E. Desport
  • CREAK : Pr L. Bouillet & Dr I. Boccon-Gibod
  • CR NC : Dr J. Donadieu, Pr T. Lamy & Dr F. Sicre de Fontbrune
  • CRMdC : Pr E. Oksenhendler, Pr C. Fieschi & Dr D. Boutboul
  • CEREO : Dr JE. Kahn & Dr G. Lefèvre
  • Research and/or diagnosis laboratories: Pr JF. Emile & Dr C. Kannengiesser
  • Patient associations : M-P. Bichet (AFMF) & V. Grosjean (IRIS)


The scientific and strategic committee includes a representative from each centre and one representative for laboratories.


The management platform comprises :

  • the coordinator : Pr R. Peffault de Latour
  • the network project manager : A. Marouane
  • the communication officer : M. Darcel
  • the secretary : V. Quinet-Rebeix


The research project manager I. Brindel coordinate and push forward the research activity of the member centres.
Her actions:
– Identify calls
– Watching out for regulations
– Helping new projects