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

• Vololona RABEHARISOA
  Centre de Sociologie de l'Innovation (Centre for sociology and innovation), École des mines
  
• Michel CALLON
  Centre de Sociologie de l'Innovation (Centre for sociology and innovation), École des mines
  

Summary

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.

Summary translated from French by Rachel MARLIN.

• The entire article was written by Pascal LE MASSON.

To obtain this article, you can :

• download it for free in French (PDF help) or contact ecopar@paris.ensmp.fr (Reference RT081299).