The centers of reference are entities accredited by the French Ministry of Health, bringing together highly specialized medical and paramedical skills to provide comprehensive care for rare diseases as close as possible to the patient’s needs.

• Improve access to diagnosis and its announcement
• Define a therapeutic, psychological and social support strategy
• Provide information and training for patients and their families
• Guide and coordinate non-specialized healthcare professionals involved in the patient’s local care, by informing and training them about the pathology and its management.
• Participate in epidemiological monitoring of the disease, and in the promotion and management of research and therapeutic trials.
• Participate in the implementation of best professional practices concerning the disease, in liaison with national and international teams working in the same field.
• Participate in the dissemination and monitoring of orphan therapies and devices.
• Engage in a dynamic process of coordination between centers treating the same group of pathologies.
• Act as a point of contact for administrative authorities and patient associations, working to improve care and quality of life for patients and their families.