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Nationales Aktionsbndnis fr Menschen mit seltenen Erkrankungen


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Ausschreibung Forschungskolleg „Seltene Erkrankungen“
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Aktuelle Bekanntmachungen des BMBF
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Bekanntmachung des EJP RD zur Förderung von Forschungsprojekten zu seltenen Erkrankungen 
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Monitoringbericht zum Umsetzungsstand des Aktionsplans
Zum Bericht (Stand Oktober 2017)


In den Dauen 6
53117 Bonn

Tel: 0228-98780-60
Fax: 0228-98780-66
Mail: info@namse.de


National Action League for People with Rare Diseases

In 2010, the German Federal Ministry of Health (BMG) together with the German Federal Ministry of Education and Research (BMBF) and the Alliance for Chronic Rare Diseases (ACHSE e.V.) founded the National Action League for People with Rare Diseases (NAMSE).

NAMSE is bringing together all key bodies and organisations of the German health care system to enable concerted action. All partners of NAMSE (28 in total) adopted a joint declaration stating the common goal to improve health and quality of life of people with rare diseases in Germany.

Goals of NAMSE:

  • enable a concerted effort
  • prepare suggestions for a National Action Plan for People with Rare Diseases
  • support the establishment of national centers of expertise.

National Plan of Action for People with Rare Diseases

In August 2013 Germany has published the National Plan of Action for People with Rare Diseases. After a three-year coordination process, which required the commitment of all those involved in the German healthcare sector, a total of 52 policy proposals were compiled. They represent a concerted effort of all 28 NAMSE partners, all responsible for the implementation, and reflect a wide spectrum of tasks on information management, possible paths to diagnosis, care-giving structures and on research into rare diseases.

Download the National Plan of Action 

This catalogue of recommended policy suggestions and proposed actions completes the initial phase of the NAMSE process. The next step is to implement the actions and accompany their further development.

The 8th European Conference on Rare Diseases & Orphan Products (ECRD) took place in Edinburgh, Scotland from 26 - 28 May 2016.
For information about the ECRD 2016 visit the official conference website: http://www.rare-diseases.eu/

The Leibniz University of Hannover sets up a portal for rare diseases

The new information portal for rare diseases (Zipse) of the Leibniz University Hannover (LUH, Low er Saxony) has been launched. This project, conducted by the Centre for Research in Health Economics (CHERH) University, aims to provide people with rare diseases and their families a range of information and resources on diseases and their salaries. In Germany, nearly four million people suffer from rare diseases with around 30 million in the European Union. The platform Zipse offers a wide range of services to its users. In addition to disseminating information to patients, it also provides guidance to providers on diagnoses, treatments and therapies to offer. The site also aims to facilitate the relationship between people, sick relatives as well as medical personnel, to improve care in a specialized institution when necessary. The project receives financial support from the German Federal Ministry of Health (BMG), amounting to € 750,000.

For further information contact Frank Martin, Centre Research in Health Economics