To mark Rare Disease Day 2025 and celebrate the launch of the new European Parliament Intergroup on Cancer and Rare Diseases, MEPs Stine Bosse, Adam Jarubas, and EURORDIS-Rare Diseases Europe are organising this special event: “Impact of Rare Diseases: More than you can imagine”.

This event aims to:

• Recapitulate the issue of rare diseases to EU policymakers at the start of the new political mandate.

• Foster a deeper understanding of the challenges faced by people living with rare diseases and their families.

• Present concrete EU-level solutions to address these issues effectively.

This event is part of a broad range of activities for Rare Disease Day, a globally coordinated movement advocating for equal opportunities, healthcare access, and timely diagnosis and treatment for people living with rare diseases. This year’s theme, “More than you can imagine,” highlights the far-reaching impact of rare diseases on individuals, families, and society if no concrete measures are taken.

Throughout the event, we will:

• Present the impact of living with a rare disease on individuals and their families, as well as the broader effects on healthcare systems, social structures, and society.

• Illustrate first-hand experiences with the latest data and evidence, providing a comprehensive understanding of the realities faced by the rare disease community.

• Outline actionable policy solutions at the European level, focusing on legislative and non-legislative measures to be prioritised during this EU mandate.

📍József Antall (JAN) 4Q1, European Parliament, Brussels, Belgium
🗓️ 5 March 2025
⏰ 13:30 to 15:30 CET