The expert centers

The reference centres are entities labeled by the Ministry of Health, bringing together highly specialised medical and paramedical skills for comprehensive management of rare diseases as perthe patient’s needs.

Their missions:

• Define a strategy for therapeutic, psychological and social support
• Ensure the information and training of the patient and their family
• Guide and coordinate non-specialised health professionals participating in the close care of the patient by informing and training them on the pathology and its management
• Participate in the epidemiological surveillance of the disease, the promotion and coordination of research and therapeutic trials
• Participate in the establishment of good professional practices concerning the disease in conjunction with national and international teams working in the same field
• Participate in the dissemination and monitoring of orphan therapies and devices
• Enable coordination between centers dealing with the same group of pathologies
• To be the interlocutor of administrative authorities and patient associations to improve the care and quality of life of the patient and their family

Reference centres