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Rare disease policy

EURORDIS represents the voice of patients and in this capacity plays a central role in the policy making for rare diseases. 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.

Advocating to influence or bring into place rare disease policy is at the core of EURORDIS’ work.

Our end goal is to bring about impactful change for people living with a rare disease by ensuring national, European and international policies are created and developed taking into account the needs of our community – 30 million people living with a rare disease in Europe, 300 million people around the world, plus their families, carers and healthcare providers. 

The change we advocate for is based on the real-life experiences and opinions of the rare disease community, collected from surveys carried out through the EURORDIS Rare Barometer Programme and consultations with our members.

We also empower patients advocates to engage in dialogue with policy makers by building their capacities through, for example, the EURORDIS Open Academy.

Finally, we engage patient advocates in the policy making process to ensure that policies that affect their everyday lives take into account their everyday needs, opinions and experiences.

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National policy

Learn more about the important role national policy plays in improving the lives of people affected by rare diseases and what EURORDIS does to support the development of national rare disease plans.

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European policy

Learn more about EURORDIS’ advocacy work to influence European policy makers including at the European Commission and European Parliament.

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International policy

Learn more about action being taken at the international level, at the UN and WHO, to make rare diseases a global health priority.

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