The Cystic Fibrosis Network is a single-disease network created before the Rare Disease Networks (Filières de Santé Maladies Rares, FSMR) were set up.
The healthcare and research network dedicated to cystic fibrosis in France has a long history and is particularly well structured. Formalized as the “Cystic Fibrosis-CFTR Network” (Filière Muco-CFTR) in 2014 within the National Rare Disease Plan 2, the Network institutionalizes the partnership between the French Cystic Fibrosis Society (Société Française de la Mucoviscidose) to represent healthcare professionals and the French Cystic Fibrosis Association (Vaincre La Mucoviscidose) to represent parents and patients.
The Network comprises a large number of actors, all of them partners: discover the Network’s organization.
The Cystic Fibrosis-CFTR Network’s missions include four main aspects:
- Promote / coordinate actions aiming to improve patient management;
- Develop teaching, education, and information;
- Favor / develop the value of the continuum between fundamental, translational, and clinical research;
- Encourage interactions with Europe and the world.