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 Nathalie Aladjidi, Pr Guy Leverger & Dr Thierry Leblanc
  • CeReCAI : Pr Bertrand Godeau & Pr Marc Michel
  • CR AM : Pr Régis Peffault de Latour, Dr Flore Sicre de Fontbrune & Dr Thierry Leblanc
  • CNR MAT : Pr Paul Coppo, Pr Eric Rondeau & Pr Fadi Fakhouri
  • CR H : Pr Abdellatif Tazi, Dr Jean Donadieu & Pr Julien Haroche
  • CEREMAST : Pr Olivier Hermine & Dr Julien Rossignol
  • CEREDIH : Pr Alain Fischer, Dr Nizar Mahlaoui & Pr Claire Fieschi
  • CR AL : Pr Arnaud Jaccard, Pr Frank Bridoux, Dr Vincent Javaugue & Dr Estelle Desport
  • CREAK : Pr Laurence Bouillet & Dr Isabelle Boccon-Gibod
  • CR NC : Dr Jean Donadieu, Pr Thierry Lamy & Dr Flore Sicre de Fontbrune
  • CRMdC : Pr Eric Oksenhendler, Pr Claire Fieschi & Dr David Boutboul
  • CEREO : Pr Jean-Emmanuel Kahn & Dr Guillaume Lefèvre
  • Research and/or diagnosis laboratories: Pr Jean-François Emile & Dr Caroline Kannengiesser
  • Patient associations : Michel Raguet (AMSAO)


The scientific and strategic committee includes a representative from each centre and one representative for laboratories. It is chaired by Pr Marc Michel.


The management platform comprises :

  • the coordinator : Pr Régis Peffault de Latour
  • the network project manager : Amélie Marouane
  • the communication officer : Nidal Haddioui
  • the project officer (on database and expert opinion) : Endjy Bhagouandine


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