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Engaging the community

Gathering evidence for policy change

Lady holding a microphone and doing her speech at the EMM

In 2019, EURORDIS launched the Rare Barometer programme, which collects real-life evidence from the rare disease community through surveys. Since then, over 15,000 people affected by rare diseases have responded to these surveys, providing valuable insights into their daily experiences and challenges. This evidence-based approach strengthens our advocacy work, as the survey results are used to inform our European advocacy actions. By sharing this information with politicians and decision-makers, we aim to ensure that they have a better understanding of the reality of living with a rare disease, and the importance of taking action to support this community.

Empowering patient advocates

EURORDIS aims to ensure that the rare disease community is well represented in policy discussions and decision-making at the EU level.

Through the EURORDIS Open Academy and Rare Disease Week, EURORDIS empowers patient advocates to become effective advocates for the rare disease community at the EU level. These programmes aim to provide insight into topics such as international advocacy for rare diseases, the European Union institutions, and the decision-making in the EU, among others. Through Rare Disease Week, EURORDIS also provides patient advocates with a series of training sessions and networking events that help them acquire the necessary knowledge and skills to effectively participate in advocacy activities at the European level.

Leveraging the rare disease community  

In 2019, EURORDIS led the Rare 2030 Foresight Study, a multi-stakeholder project aimed at providing a comprehensive overview of the state of rare disease policies in Europe and identifying future scenarios and recommendations. The study involved more than 250 stakeholders and experts, including rare disease patient representatives, healthcare professionals, policymakers, and researchers, and was conducted over two years, ending in January 2021.

Following the release of the Rare 2030 Foresight Study Recommendations, EURORDIS launched a campaign called #30millionreasons for European Action on rare diseases, calling for a new and improved action plan on rare diseases in Europe.

EURORDIS-Rare Diseases Europe asked European Federations, National Alliances for Rare Diseases, its Patient Organisation Members, and the wider rare disease community to share their personal reasons for change. Over 2100 people, including those living with a rare disease, parents, siblings, friends, advocates, healthcare professionals, and researchers, shared their reasons why Europe must act. These reasons are personal experiences, hopes, and fears that are moving, motivating, sometimes devastating, impassioned, and humbling.

The #30millionreasons campaign emphasised the need for a coordinated and comprehensive response to the challenges faced by 30 million people living with a rare disease in Europe. The call for an action plan is an essential step towards ensuring that rare disease patients have access to timely diagnosis, appropriate treatment, and support and that their rights and needs are fully recognised and addressed.

The reasons shared by the participants can be found on the campaign’s website,, where they are organised by country. Additionally, a book containing the reasons has been produced and presented to policymakers and influential figures around Europe.

The campaign also features four patient advocates from across Europe who shared their reasons in videos.