Contribution des association de patients à l'organisation, au fonctionnement et à la réglementation des collections d'échantillons biologiques

Patients?s organisations working in the field of genetics are facing a challenge: despite their structural differences, they have to organise themselves in order to rationalise their activities, namely by gathering together and uniformising their procedures. Moreover they have to deal with the key question of the control of the access to samples and results which might follow from the inventions realised on the basis of the material maintained in the collections. The elaboration of a consistent policy in that respect is a prerequisite of a balanced enhancement of the collections, in the general interest, specially in the sector of rare diseases.