Latest News View all news More Than You Can Imagine: A recap of our conference at the European Parliament News Our Rare Disease Day event at the European Parliament demonstrated the impact of living with rare diseases and the value... Patient organisations warn against EU rollback on patient involvement in medicines regulation Press release EURORDIS and the European Patients' Forum issue a joint statement. Breaking Barriers: Advancing accessibility and inclusion for cerebral palsy in Milan Member's Comment The Vote4All.eu project organised an event last month in Milan to promote participation in European democracy by improving accessibility and... European Health Data Space: Adoption Complete, All Eyes on Execution News We highlight the adoption of the EHDS and its potential to transform rare disease healthcare and research. No More Waiting: MEPs insist on action at Rare Disease Day event Press release Policymakers, patient advocates, and healthcare leaders gather at the European Parliament to urge for EU action Launch of the European Parliament Intergroup on Cancer & Rare Diseases: A new forum for collaboration and action Press release The European Parliament Intergroup on Cancer & Rare Diseases launched its 2025 Annual Workplan. Black Pearl Awards 2025: EURORDIS honours changemakers of the rare disease community Press release EURORDIS celebrates the extraordinary individuals, organisations, and companies driving progress for people living with a rare disease. A Path Rewritten: Kostiantyn’s Journey Through War, Rare Disease, and Film Community Kostiantyn Bidnenko shares how living with alkaptonuria unexpectedly shaped his life after Russia launched its full-scale invasion of Ukraine. EURORDIS Rare Barometer finds major barriers to disability recognition and social participation Press release EURORDIS Rare Barometer releases significant findings on the daily life of people living with rare diseases. Rare Disease Day 2025 – You Can Do More Than You Can Imagine! News On 28 February, the world will unite for the 18th edition of Rare Disease Day! How can you get involved? Keep up to date with the latest news, events, and campaigns from EURORDIS Subscribe
