THE PARTICIPATION OF PATIENTS IN THE PROCESS OF PRODUCTION OF KNOWLEDGE - THE CASE OF THE FRENCH MUSCULAR-DYSTROPHIES ASSOCIATION

This article presents work in progress on support given by the French muscular dystrophies association (Association francaise contre les myo pathies) to clinical and biological research related to neuromuscular illnesses since the beginning of the 1980s. Our preliminary findings s how that people with these diseases and their families participate act ively in the production of knowledge. They also have a remarkable capa city for negotiating with specialists about the orientations or resear ch and practice. This original form of relationships between patients, clinicians and researchers suggests a model of mutual learning which is embodied in what the authors term a ''reflexive organization''.