National action league for rare diseases launches in Germany
The German Federal Ministry of Health initiated a national action league for people with rare diseases - Nationales Aktionsbündnis für Menschen mit Seltenen Erkrankungen (NAMSE) - on 8 March in Berlin. The partners - the major institutions and stakeholders of the German health care system - have adopted a common declaration to improve the health situation for people with rare diseases in Germany. The league is based on three main pillars – the Federal Ministry of Health, the Federal Ministry of Education and Research, and the National Alliance of Patient Groups for Rare Diseases. By the declaration all partners of the league support “the initiative for the formation of a National Action League for people with rare diseases” and, importantly, assert that the “Action League for people with rare diseases will help to implement the recommendation of the Council of the European Union in Germany”. The action league will contribute input to the creation of a National Action Plan for Rare Diseases in Germany; the implementation and monitoring of this plan; and the identification and formation of centres of expertise. With the major institutions and stakeholders of the German health system implicated, along with Germany’s national alliance of patient groups for rare diseases (ACHSE), the ongoing dedication of First Lady Eva Luise Köhler, Orphanet Germany, and other key players, the league is expected to “coordinate measures for improving the health situation of people with rare diseases and to initiate pilot projects and other actions in the field”. The institutions and stakeholders will name representatives to a steering committee which is expected to meet for the first time before the summer holiday.
Learn more (in German language)
Visit the website of the Federal Ministry of Education and Research (English and German languages)