Austria adopts its National Action Plan for Rare Diseases
Austria has recently adopted its National Action Plan for Rare Diseases which is called NAP.se. The NAP.se was commissioned by the Federal Ministry of Health of Austria (BMG) in collaboration with two advisory bodies - Group of Experts on Rare Diseases (since 2014 Advisory Board for rare diseases) and Strategic Platform for Rare Diseases.
The NAP.se contains nine key topics that take into account both the European recommendations and national needs. These are the following:
- Documentation of rare diseases in the health and social system
- Improvement of medical-clinical care of rare disease sufferers
- Improving the diagnosis of rare diseases
- Improving the treatment of and access to treatments for rare diseases
- Research in the field of rare diseases
- Improving knowledge and awareness of rare diseases
- Improving epidemiological knowledge in the context of rare diseases
- Establishment of permanent consultative bodies for rare diseases in BMG
- Recognition of the benefits of self-help
With regard to caring for rare disease patients, the focus of NAP.se is on the better coordination of clinical care by designating centres of expertise and their subsequent crosslinking within Austria as well as their integration into European Reference Networks. The aim of the NAP.se is not to create new structures, but join in on regional centres of expertise that meet certain quality and performance criteria. In order to provide patients with a speedy confirmed diagnosis, the NAP.se calls for the introduction of uniform standards in Austria as well as pooling of expertise from other regions.
The implementation process of NAP.se and its success will be verified by appropriate monitoring. Diversity and complexity of the measures require that the definition of indicators is an active process for the implementation of each operation. This ensures that current developments and adaptations are met as required.
Read the Austrian National Action Plan for Rare Disease (NAP.se) in German
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