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Setting the agenda

EURORDIS represents the voice of people living with a rare disease. As a patient-led organisation, we play a central role in advocating for policies and initiatives that improve the lives of individuals living with rare diseases. Working in close collaboration with our members, we have been instrumental in shaping existing legislation and setting the direction for care and treatments for people living with rare diseases in Europe.

Where we work

Our work is focused on the European, national, and international levels. While the number of individuals living with a rare disease collectively is high, patient populations for each of the 6,000 rare diseases are low, and patients are often scattered across countries. Thus, the most effective strategies for rare diseases are cross-border. Europe provides a unique opportunity for the rare disease community to create the critical mass of patients, experts, knowledge, and resources necessary to improve the lives of those living with rare diseases and adds high value to national efforts.

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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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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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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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Setting the ambition

 While we have seen significant progress in rare disease policy over the past two decades, there is still much work to be done to meet the needs of individuals living with a rare disease.

 At EURORDIS, we are committed to advancing the interests of the rare disease community. We led an EU-backed foresight study, Rare 2030, which involved over 250 experts and stakeholders, as well as 4000 patients. This participatory project guided a reflection on rare disease policy in Europe over the next ten years and beyond, resulting in eight overarching recommendations to ensure that the future of the 30 million people living with a rare disease is not left to chance or luck.

The Rare 2030 recommendations lead our advocacy work in the above-mentioned priority areas. In particular, EURORDIS and its members have been calling for a comprehensive strategy for rare diseases, since it emerged as the main recommendation of the Rare 2030 study in 2021. To bring about meaningful change in the lives of people living with a rare disease such a strategy should take the form of a European action plan for rare diseases.