Make your voice heard! Give your opinion on the possible ways to shape the future of your rare disease regarding access to health care, medical and social research, early diagnosis for children,

“The health of 30 million people living with a rare disease in Europe should not be left to luck or chance. Rare 2030 prepares a better future for people living with a rare disease in Europe with foresight.”


WHAT IS Rare 2030?

Rare 2030 is a foresight study that gathers the input of a large group of patients, practitioners and key opinion leaders to propose policy recommendations that will lead us to improved policy and a better future for people living with a rare disease in Europe. This a two year project that will end in a presentation to EU Parliament in February 2021 with recommendations on the most critical areas needing sound policy. To keep updated with the process, follow us on social media (#Rare2030) or subscribe to our newsletter.



Since the adoption of the Council Recommendation on European Action in the field of Rare Diseases in 2009, the European Union has fostered tremendous progress to improve the lives of people living with rare diseases. Rare 2030 will guide a reflection on rare disease policy in Europe through the next ten years and beyond.


To learn more about project updates, click here.

Rare 2030 Final Event

Save the date!

February 23rd 2021


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