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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

 

More info about CARGO

Centre de Référence National du Kératocône - CRNK

 

Location: CHU de Toulouse

Coordinator : Pr François Malecaze

 

 

More info about CRNK

Centre de Référence Maladies Rares "Maladies Sensorielles Génétiques" - MAOLYA

 

Location: CHU de Montpellier

Coordinator : Dr Isabelle Meunier

 

More info about Maolya

Centre de Référence des maladies rares en ophtalmologie OPHTARA

 

Location: Hôpital Necker, Paris

Coordinator : Pr Dominique Brémond-Gignac

 

 

More info about OPHTARA

Centre de Référence des affections rétiniennes et maculaires d'origine génétique RÉFÉRÈT

 

Location: CHNO XV-XX, Paris

Coordinator : Pr José-Alain Sahel

 

More info about REFERET

Centre de Référence des surdités génétiques 

 

Location: Hôpital Necker, Paris

Coordinator : Dr Sandrine Marlin

 

 

More info about Surdités Génétiques

Missions :

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

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

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

  • 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);

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

  • 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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