Germany adopts the National Plan for rare diseases
In keeping with the European Council recommendations, Germany has elaborated and adopted the National Plan for Rare Disease, which will guide and structure actions in rare diseases within their health and social systems. In 2010 the German Federal Ministry of Health (BMG), together with the German Federal Ministry for Education and Research (BMBF) and the Alliance of Chronic Rare Diseases (Allianz Chronisch Seltener Erkrankungen, ACHSE), founded the National Action Coalition for Persons with Rare Diseases (Nationales Aktionsbündnis für Menschen mit Seltenen Erkrankungen, NAMSE). The goal of NAMSE is to improve the quality of life of individuals with a rare disease through a concerted effort. Following a three-year process of coordinating these actions, which involved the commitment of all those involved in the healthcare sector, a total of 52 policy proposals were compiled and included in a National Plan of Action for Persons with Rare Diseases.
The 52 policy proposals in the National plan represent a broad spectrum of tasks to be executed as it addresses the most pressing problems of the patients and their relatives. They include many concrete suggestions on implementing information management, on possible paths to diagnosis, on caretaking structures and on conducting research on rare diseases. The goal of NAMSE is to establish and provide aid to National and European networks of Reference and Expertise Centres that are adapted to the special needs of rare disease patients and make them available to patients and their doctors. This was also highlighted to be in agreement with the cross-border healthcare directive. Adequate funding and certification for these centers will ensure timely diagnoses so patients can receive necessary care. An important goal of the National plan is to intensify the research in the area of rare disease. The National Plan provides vital contribution to the goals of the Framework Program of Healthcare Research presently being pursued by the German Federal Government. Thus funds for research in the field of rare diseases in order to improve diagnosis and treatment are provided in this plan
The successful adoption of this national plan is the result of the hard work and unrelenting engagement of the many experts who participated in the workgroups and of those who were members of the Steering Committee. The publication of the policy proposals is the first big step of the National Action Plan. This will be followed by implementing and monitoring the suggested proposals.
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