Rare Disease Day 2025: EURORDIS Event at the European Parliament

To mark Rare Disease Day 2025, EURORDIS-Rare Diseases Europe is organizing a significant event titled “Impact of Rare Diseases: More Than You Can Imagine”. This event aims to highlight the profound effects of rare diseases on individuals, families, healthcare systems, and society at large.

Event Details:

Date: Wednesday, 5 March 2025
Time: 13:30 to 15:30 CET
Location: József Antall (JAN) 4Q1, European Parliament, Brussels, Belgium

Agenda Highlights:

Setting the Scene (13:30 – 14:00):
- Welcome Address: MEPs Adam Jarubas (EPP, Poland) & Stine Bosse (Renew, Denmark)
- Personal Story: Adéla Odrihocká from Rare Diseases Czech Republic will share insights related to data from the latest EURORDIS Rare Barometer survey results on the impact of living with a rare disease.
- Impact Overview: Tim Wilsdon, Vice President at Charles River Associates, will present key findings from the EURORDIS Rare Barometer survey results on the impact of living with a rare disease.
- European Commission Perspective: A video message from Commissioner Oliver Varhelyi will outline the Commission’s stance on rare disease policies.
Focused Sessions (14:00 – 15:00):
- Enhancing Diagnosis: Discussions on strategies to achieve quicker and more accurate diagnoses for rare diseases.
- Policy Solutions: Exploration of actionable policy measures at the European level to address current challenges.

This event is a significant opportunity to advance awareness and foster tangible progress in the rare disease community. We encourage our community members to participate.

For more information and to register, please visit the EURORDIS event page.