Published in:
Open Access
01-11-2012 | Meeting abstract
Developing a national plan for rare diseases in Germany through concerted action: the national action league for people with rare diseases
Authors:
Véronique Héon-Klin, Alexandra Halbach, Miriam Schlangen, Birgit Schnieders
Published in:
Orphanet Journal of Rare Diseases
|
Special Issue 2/2012
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Excerpt
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. …
