Rare diseases reference centers
363 centers of reference, bringing together highly specialized hospital-university teams.
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.
Centre de Référence pour les Affections Rares en Génétique Ophtalmologique CARGO
Location: Hôpitaux Universitaires de Strasbourg
Coordinator : Pr Hélène Dollfus
Centre de Référence National du Kératocône - CRNK
Location: CHU de Toulouse
Coordinator : Pr Pierre Fournié
Centre de Référence Maladies Rares "Maladies Sensorielles Génétiques" - MAOLYA
Location: CHU de Montpellier
Coordinator : Pr Isabelle Meunier
Centre de Référence des maladies rares en ophtalmologie OPHTARA
Location: Hôpital Necker, Paris
Coordinator : Pr Dominique Brémond-Gignac
Centre de Référence des affections rétiniennes et maculaires d'origine génétique RÉFÉRÈT
Location: CHNO XV-XX, Paris
Coordinator : Pr Isabelle Audo
Centre de Référence des surdités génétiques
Location: Hôpital Necker, Paris
Coordinator : Dr Sandrine Marlin
Missions :
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facilitating diagnosis and defining a therapeutic, psychological and social support strategy;
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defining and disseminating care protocols, in conjunction with the French Health Authority (HAS) and the French national union of the medical insurances (UNCAM);
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coordinating research work and participate in epidemiological surveillance in conjunction with the French Institute for Health Surveillance (InVS);
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participating 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);
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animating and coordinating the networks of health and medico-social correspondents;
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being 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)
Contact the centres of SENSGENE
Cartography of the centres SENSGENE
Read the law text of 25th November 2017
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