French 1901 law governing associations, is the first French
association fully dedicated to Fabry disease patients.
The association regroups both patients and all persons implicated in Fabry Disease.
A Scientific Committee made up of physicians and healthcare professionals specialized in Fabry Disease has been set up to back the Association in its projects enabling it to address questions of a medical nature and to bring the most up-to-date and precise answers possible. The principle role of this Scientific Committee is to assist the Association scientifically, giving direction and coordinating research activities corresponding to the Association’s missions. Its members reply to medical questions asked by patients and bring their guarantee to the different document s that are published by the Association or to the replies given during discussion groups on the Association’s internet site. The Scientific Committee also decides jointly with the Association regarding new information to feature on the agenda of the Yearly Association Day.
Scientific Committee members agree to an ethical code of conduct from the moment of their membership.
Pr Roland JAUSSAUD (Internist, Reims)
Dr Olivier LIDOVE (Internist, Paris)
Mme Michelle AKESBI (Psycholochist, Paris)
Dr Soumeya BEKRI (Biochimist, Rouen)
Pr Gabriel CHOUKROUN (Nephrologist, Amiens)
Mme Annick DEBRENNE (Social assistant, Reims)
Pr Michel TSIMARATOS (Pédiatrist, Marseille)