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NAMSE
The National Action Alliance for People with Rare Diseases (NAMSE) is dedicated to improving the medical care of those affected and to addressing the healthcare issues they and their families encounter. In August 2013 it did NAMSE presented the national action plan with 52 proposed measures, for example for better information management, possible diagnostic methods and care structures. The overarching goal of this action plan is to improve the health situation of those affected in Germany.