Could the management of medical research be undertaken by patients ? The case of the Association Française contre les Myopathies (AFM : French Myopathy Association)

For twenty years, the AFM (Association Française contre les Myopathies : French Myopathy Association) has been financing research into neuromuscular diseases. The AFM has a curious way of operating with respect to its interactions with the medical profession, with researchers, manufacturers, public authorities and the media. Far from being a simple sponsor of research, the AFM tries actively to integrate patients and their families into the work of specialists. With regards to the authorities and the media, the AFM has brought forgotten diseases to light and has helped a new mission of public service emerge. The AFM also originated the organisation which makes mutual learning between all the people involved possible and allows the creation of a market in a sector where no products existed before. The relationships, in particular between research centre laboratories and chemists’ shops, have created a model with an integrated market in which the management of research and innovation is completely new.