European Declaration on Rare Diseases Adopted at High-Level Meeting in the European Parliament

From 9–12 December 2025, a High-Level Meeting on Rare Diseases 2025 was held at the European Parliament in Brussels. The event was co-organised by the Brains for Brain Foundation, MEP Vytenis Andriukaitis (S&D, Lithuania), and the European Reference Networks (ERNs).

This important initiative brought together an exceptional community of policymakers, researchers, clinicians, industry leaders, and patient representatives, united by a shared commitment to transforming the landscape for people living with rare and complex diseases in Europe. A key focus of the meeting was the empowerment and long-term sustainability of the ERNs.

The High-Level Meeting gathered more than 100 participants, including several EU Commissioners and ERN Coordinators. It culminated in the adoption of a European Declaration on Rare Diseases — a bold commitment to fostering a sustainable research and innovation ecosystem supported by dedicated funding mechanisms.

Alessandra Ferlini, Coordinator of Screen4Care, was invited as an EU researcher and leading expert in the field. She presented the Screen4Care project during a roundtable discussion dedicated to genomic newborn screening. Klelia Salpeia, Screen4Care EU Project Officer, also attended the meeting.

“This is only the first act of this important initiative,” said Alessandra. “Further events and meetings are planned to strengthen ERN empowerment in rare disease standards of care, including synergies with genomic programmes and genetic newborn screening.”