Acceso usuarios
Caroline Huyard
Whereas many studies address the capacity of so-called patient organisations to influence health policy, the invention of the “rare diseases” category requires to describe simultaneously the making of a cause and of a policy. An American public policy measure creates a “public” that encompasses, among others, persons affected with an uncommon disorder who take collective action. As an answer to this action, the American administration invents the category of “rare diseases”, both as a public action instrument and as a new identity for this public. The French administration lastly sees in this instrument the problem to be solved, and fosters a patients' mobilization in Europe.
