L'implication des malades dans les activités de recherche soutenues par l'Association française contre les myopathies

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Abstract
The participation of patients in the process of production of knowledge: the case of the french muscular distrophies association This article presents work in progress on support given by the French muscular dystrophies association (Association française contre les myopathies) to clinical and biological research related to neuromuscular illnesses since the beginning of the 1980s. Our preliminary findings show that people with these diseases and their families participate actively in the production of knowledge. They also have a remarkable capacity for negotiating with specialists about the orientations of research 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».