Centre de référence
des maladies rares
du pancréas

What is a rare disease ?

What is a rare disease ?

A disease is described as rare when it affects one person in 2,000; i.e., in France, fewer than 30,000 patients per pathology. There are over 3 million French patients affected by one of the 7,000 rare diseases currently identified, and around 25 million people in Europe.

Promoted by two successive national plans, a highly-structured national organization is made up of Reference Centres for Rare Diseases (centres de référence maladies rares - CRMR) and by Health Networks for Rare Diseases (filières de santé maladies rares - FSMR), all serving to support various initiatives in this field. They aim to facilitate interpretation of patients’ health journeys, and reduce delays in confirmed diagnoses.

What is a Health Network?

booklet entitled “Health Networks for Rare Diseases” revised in June 2020 (Filières de santé maladies rares” -  Last update: June 2020) describes the work of these Health Networks within the national system for rare diseases, and introduces the 23 Networks.


Rare Diseases info service

Rare Diseases alliance

Rare Diseases Foundation