Assistance Publique-Hôpitaux de Paris

AP-HP is the largest hospital system in Europe and one of the largest ones in the world. It provides health care, teaching, research, prevention, education, and emergency medical service in 52 branches of medicine. It employs more than 90,000 people (including 15,800 physicians) in 39 hospitals and receives more than 8 million annual patient visits.

Necker-Enfants malades is one of the hospital groups of AP-HP and has a long tradition of research and care especially in rare diseases, receiving dozens of thousands of patients suffering from rare diseases every year and hosting today 32 reference centers for rare diseases, two clinical investigation centers with a strong expertise in rare diseases, and Imagine Institute, a translational research center dedicated to genetic diseases presenting a world-class task force. The French National Registry of rare diseases (BNDMR), hosted by AP-HP, aims to provide France with a homogeneous collection of data based on a common data set to document health status of patients with rare diseases, and better assess the effect of the national policies. It has been deployed in all rare disease expert centers and currently collected data on more than 700,000 patients.