The structuring of the care sector for patients suffering from a rare disease is one of the objectives of axis n°6 of the National Rare Diseases Plan 2005-2008: "improving access to care and quality of care".
The reference centers labeled do not have the vocation to take care of all the patients suffering from rare diseases. One of the missions assigned to them is to gradually organize the territorial network with existing structures of care that will be identified as "centers of competence". These centers of competence are designed to ensure the care and follow-up of patients, close to their homes, and to participate in all the missions of reference centers.
The National Rare Diseases Plan foresees the structuring and grading of care for patients with rare diseases on two levels:
The number of centers of competence and their geographical distribution are determined according to:
(source: French Minister of Health)