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Rare diseases reference centers

131 centers of reference, bringing together highly specialized hospital-university teams, received € 40 million in general interest missions.

The reference centers have an expertise role for a rare disease or a group of rare diseases that have developed specific and recognized competencies in this field. Because of the scarcity of care pathology and the small number of specialist teams in the field, this expertise enables them to attract (interregional, national or international) implantation.

Missions :

  • To facilitate diagnosis and defining a therapeutic, psychological and social support strategy;

  • To define and disseminate care protocols, in conjunction with the French Health Authority (HAS) and the French national union of the medical insurances (UNCAM);

  • To coordinate research work and participate in epidemiological surveillance in conjunction with the French Institute for Health Surveillance (InVS);

  • To participate in training and information activities for health professionals, patients and their families, in collaboration with the French national institute for prevention and health education (INPES);

  • To animate and coordinating the networks of health and medico-social correspondents;

  • To be privileged interlocutors for guardians and associations of patients.

The designation of reference centers for the care of rare diseases is carried out under a national labeling procedure. It is based on independent expertise and precise specifications. The label is awarded by the French Minister for Health for a period of five years.

(source: website of the French Minister of Health)

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