Volume 7 Supplement 2
Developing a national plan for rare diseases in Germany through concerted action: the national action league for people with rare diseases
© Héon-Klin et al; licensee BioMed Central Ltd. 2012
Published: 22 November 2012
To improve health and well-being of people with rare diseases and to implement the Council Recommendation of the European Union on rare diseases the German Federal Ministry of Health, in cooperation with the Federal Ministry of Education and Research and the National Alliance of Patient Groups for Rare Diseases, has initiated a national action league for people with rare diseases - Nationales Aktionsbündnis für Menschen mit Seltenen Erkrankungen (NAMSE). NAMSE brings together all key bodies and organisations of the German health care system (27 in total) to enable concerted action based on the adoption of a joint declaration. In four working groups on “Information, Diagnosis, Care/Centres/Networks and Research” of NAMSE recommendations are being developed.
NAMSE pursues a patient-centred approach respecting the patients and their concerns. Therefore seamless care pathways are a recurrent theme throughout the planned measures. They are considered to accelerate the diagnosis and are of central importance for patient without diagnosis.
Each working group of NAMSE has developed a set of advices. For all special indicators with targets and a timeline are being developed to evaluate their effectiveness after their implementation. Therefore an evaluation board comments all indicators proposed for the different advices. All advices have to be prioritised based on their probability of implementation by a consensus conference. The draft of German National Action Plan will be assigned to the Federal Ministry of Health in 2013.
BMBF: Bundesministerium für Bildung und Forschung/Federal Ministry of Education and Research ACHSE e.V.: Allianz Chronischer Seltener Erkrankungen/Alliance for Chronic Rare Diseases.
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