The Voice of Rare Disease
Patients in Europe
NATIONAL PLANS
Rare Disease Policy
EURORDIS represents the voice of patients and in this capacity plays a central role in the regulatory process. The contribution of EURORDIS has been key to the adoption of important rare disease and orphan medicine legislations at the European level, including the EU Regulation on Orphan Medicinal Products, the EU Regulation on Paediatric Drugs, the EU Regulation on Advanced Therapies, the Commission Communication Rare Diseases: Europe's Challenges, the Council Recommendation on a European action in the field of rare diseases, the EU Directive on Patients’ Rights in Cross-border Healthcare, and others.
By partnering with rare disease national alliances, EURORDIS also contributes to national processes, and facilitates the adoption and implementation of national plans and strategies for rare diseases in European countries.
Thanks to the EU Commission Communication and Council Recommendation on an action in the field of rare diseases, national rare diseases policies and plans have gained momentum
Why is a rare disease national plan or strategy needed in your country?
Six reasons to adopt a national plan for rare diseases in your country
What is included in a rare disease national plan/ strategy?
A plan/ strategy includes relevant national measures to improve care at every stage of the patient’s journey, from diagnosis to access to treatments and therapies, through long-term follow-up, social care and services.
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).
EUROPLAN National Conferences
The EUROPLAN National Conferences are the tool designed to promote the adoption and implementation of national plans or strategies for rare diseases in European countries.
Rare disease plans and strategies in European countries
Click on the flag to find the country’s national plan or strategy for rare diseases, as well as the relevant EUROPLAN conference report.
Rare Disease Policy | www.eurordis.org
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