Reference centers for rare diseases

A reference center brings together a highly specialized hospital team with proven expertise in a rare disease - or a group of rare diseases - which carries out its activities in the fields of care, education, training and research. This medical team, also with paramedical, psychological, medical and social, educational and social skills, organizes patient care in connection with all the relevant health professionals.

Since 2021, 29 Rare Disease Reference Centers (CRMR) of Hôpital Necker-Enfants malades AP-HP are affiliated to Institut Imagine. And two CRMRs "outside the walls" of the AP-HP Cochin and HEGP hospitals have joined Imagine. They are key contacts for patient associations, and play a vital role in developing clinical trials and setting up cohorts. Without this, research could not be conducted.

The heart of care

Rare diseases include about 8,000 different pathologies and 3 million people are affected by them in France alone. They are serious, chronic and disabling diseases affecting all organs and expressing themselves in different ways. They require specialist, burdensome and long-term care.

Therefore, reference centers were created to structure the supply of health services for patients and provide optimum care on every aspect. The reference centers facilitate patient diagnosis and care, coordinate research work, improve the understanding of pathologies for patients, and are key contacts for patient associations.

31 reference centers for rare diseases affiliated with Imagine

crmr 1 bis ENG
centres de réf eng 2 2022 mai