A reference centre on a rare disease (or a set of rare diseases) brings together multidisciplinary hospital skills organised around highly specialised medical teams.
These centres of reference comprise coordinating and constituent centres of reference and centres of competence for rare diseases (CCMR). They are responsible for healthcare and for the management of healthcare pathways for people affected by rare diseases.
The CRMRs were established up as part of the French Ministry of Health and Solidarity’s “National Plan on Rare Diseases 2005-2008”. At the heart of the care system for rare diseases, they have multiple missions: coordination, expertise, recourse, research, teaching and training.
To find out more, please visit the Minister’s website on the provision of care for rare disease patients: https://sante.gouv.fr/soins-et-maladies/prises-en-charge-specialisees/maladies-rares/article/l-offre-de-soins.