EDERA Conference

Key Takeaways from ERDERA 2025
The conference concluded with a strong message: Europe must act together to shape a better future for people living with rare diseases. Among the most important themes were:

• a renewed call for an EU Action Plan on Rare Diseases,
• stronger integration of European Reference Networks (ERNs),
• the role of early diagnosis and strategic newborn screening in personalised care,
• the launch of Poland’s National Mirror Group, aligning national action with EU priorities,
• a spotlight on translational research and scalable diagnostics driven by ERDERA,
• the importance of data infrastructure, interoperability, and real-world evidence,
• continued commitment from the European Commission to support rare disease research under Horizon Europe.

A particularly memorable moment was the unveiling of a mural dedicated to the rare disease community. Participants were invited to leave handprints—a symbolic gesture of solidarity and shared responsibility.

Hosted under the Polish Presidency of the EU Council, the two-day conference brought together policymakers, researchers, clinicians, and patient advocates. The discussions and initiatives launched in Warsaw signal promising steps forward for ERDERA and for rare disease research in Europe.

Dr Konopka’s presentation demonstrated how projects such as SAME-NeuroID and P4Health are contributing to a stronger European research ecosystem—bringing scientific innovation closer to clinical application and ultimately improving the lives of patients across the continent.