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European Parliament Event on Rare Disease Day

January 2025
Banner featuring the text 'Impact of Rare Diseases: More Than You Can Imagine' in front of Rare Disease Day colours of pink and light blue in the background.

To mark Rare Disease Day 2025, and following the launch of a new European Parliament Intergroup on Cancer and Rare Diseases, we are organising a special event at the European Parliament in Brussels, hosted by MEP Stine Bosse (Renew, Denmark). The event, entitled Impact of Rare Diseases: More than you can imagine, aims to recapitulate the issue of rare diseases to EU policymakers and outline potential policy solutions at the start of this new political mandate. Throughout the event, thanks to the participation of key EU policymakers, experts and patient representatives, we will:

  • Present the impact of living with a rare disease on individuals and their families, while examining the broader effects of rare disease on healthcare systems, social structures, and society at large. 
  • Underpin first-hand experiences with the latest data and evidence, offering a comprehensive understanding of the current realities faced by the rare disease community. 
  • Outline actionable policy solutions at the European level, focusing on legislative and non-legislative measures that should be prioritised and adopted during this EU mandate. 

Rare Disease Day 2025 is a critical opportunity to advance awareness and foster tangible progress. Together we will ensure that the challenges faced by our rare disease community are acknowledged and present concrete, actionable, EU-level solutions to address them!

📍European Parliament, Brussels
🗓️ 5 March 2025
⏰ 13:30 to 15:30 CET


For further information requests, please contact our Public Affairs Manager, Rachel Butcher via email: rachel.butcher@eurordis.org