Zentren für Seltene Erkrankungen – Strukturen, Aufgaben und Netzwerke

People suffering from rare diseases are optimally treated in specialized centers with an interdisciplinary and multiprofessional team. These centers are also actively involved in research and provide all levels of teaching and education with respect to a single disease or a group of diseases. In Germany, there are now more than 30 reference or so-called type A centers for rare diseases located at university hospitals, which undertake these tasks with their associated disease (group)-specific type B or specialist centers. The centers collaborate in various national and international networks and work in close contact with patient organizations. The current challenges for the centers include the long-term sustainable financing and the construction of a telemedical infrastructure for networking.