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
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases