Documents necessary for the design and elaboration of a national plan/ strategy for rare diseases
The European Recommendations and policies listed have been adopted by consensus by EU Member States and stakeholders (academia, industry, patients).
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The EURORDIS position papers and recommendations have been adopted following an extensive consultation with member rare disease patient organisations, and sometimes with additional expert stakeholders.
These reference documents are organised per strategic area, constituting the national plan/strategy:
1. Governance
2. Definition, codification, inventorying of rare diseases and patient registries
3. Research (including development and access to orphan drugs, innovative treatments)
4. Centres of Expertise and European Reference Networks (ERNs)
5. Social services and programmes adapted to rare diseases
6. Empowerment of patient organisations
7. Sustainability
Page created: 13/02/2019
Page last updated: 03/06/2019