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.

Care

Out of 34 reference centers for rare diseases at Necker-Enfants malades hospital AP-HP, 25 are affiliated with Imagine Institute. 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 more than 8000 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.

CRMR 2019
Centres de référence maladies rares affiliés en 2019 © Bruno Boudon