National Action Alliance for People with Rare Diseases (NAMSE).
NAMSE is a coordination and communication body founded in 2010 by the German Federal Ministry of Health (BMG) together with the Federal Ministry of Education and Research (BMBF) and the Alliance of Chronic Rare Diseases (ACHSE e. V.) to initiate better care for patients with rare diseases. In 2013, the 28 alliance partners presented a "National Action Plan" consisting of a total of 52 individual measures. One of its priority elements is the establishment of a nationwide network of centers for rare diseases (CRDs). As central contact points for patients with unclear and rare diagnoses, reference centers ("type A centers") are to be established at university hospitals, further small "type B centers" will be affiliated.
Centers for rare diseases ("type A centers") have now been established at around 30 university hospitals. However, the implementation of the entire package of measures has repeatedly stalled in the past, as the alliance partners had to struggle for a long time over questions of funding and quality assurance of the CSEs.