The mission of rare disease networks (FSMR) is to facilitate the orientation of patients, collecting health data, dissemination of good practices, and coordination of research, teaching and learning actions.
These networks target rare diseases, i.e., occurring in fewer than one person in 2000 (fewer than 30,000 people affected per disease).
In France, rare diseases are a major public health issue: 8000 pathologies have been listed, for a total of 3 million patients, i.e., 4.5% of the population.
These networks allow France to participate at an international level, closely tied to, notably, the European reference networks for rare disease management, which have been set up since 2016.
The structure of rare disease networks was validated within the 2011–2014 national rare disease plan (PNMR) 2011-2014.
France today has 23 rare disease networks.