Volume 7 Supplement 2

6th European Conference on Rare Diseases and Orphan Products

Open Access

Developing a national plan for rare diseases in Germany through concerted action: the national action league for people with rare diseases

  • Véronique Héon-Klin1Email author,
  • Alexandra Halbach1,
  • Miriam Schlangen2 and
  • Birgit Schnieders1
Orphanet Journal of Rare Diseases20127(Suppl 2):A9

DOI: 10.1186/1750-1172-7-S2-A9

Published: 22 November 2012

Introduction

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.

Results

The process of identifying and later labelling national centres of expertise and their participation in European Reference Networks is of central importance. Three types of centres have already been defined on the basis of specific criteria (Figure 1). These can be differentiated in disease/disease-group specific medical care functions or structures and non-disease specific activities (important for all rare diseases). To guide patients and health care professionals through the health care system a common, quality assured information platform, pooling the existing information services, is discussed.
https://static-content.springer.com/image/art%3A10.1186%2F1750-1172-7-S2-A9/MediaObjects/13023_2012_Article_426_Fig1_HTML.jpg

Figure 1

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.

Conclusions

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.

Declarations

Acknowledgement

BMBF: Bundesministerium für Bildung und Forschung/Federal Ministry of Education and Research ACHSE e.V.: Allianz Chronischer Seltener Erkrankungen/Alliance for Chronic Rare Diseases.

Authors’ Affiliations

(1)
Federal Ministry of Health
(2)
Coordination Office of national action league for people with rare diseases – Nationales Aktionsbündnis für Menschen mit seltenen Erkrankungen (NAMSE) c/o Mukoviszidose Institut gGmbH

Copyright

© Héon-Klin et al; licensee BioMed Central Ltd. 2012

This article is published under license to BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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