We are excited to announce the High-Level Meeting (HLM RARE) focused on strengthening the European research and innovation ecosystem for rare diseases. This important initiative will take place in Brussels from December 9-11, 2025.

HLM RARE is led by the Brains for Brain Foundation (B4B) under the presidency of Prof. Maurizio Scarpa, working in close collaboration with the European Reference Network (ERN) Coordinators. The initiative has received invaluable political support from Vytenis Andriukaitis, current Member of the European Parliament and former European Commissioner for Health and Food Safety, who co-hosts the meeting with B4B. This initiative is co-funded by the European Union through the EU4Health Programme.

Inspired by the recommendations of the recent Draghi, Letta, and Heitor reports, HLM RARE aims to promote a unified approach to rare diseases across the European Union and identify concrete actions and incentives to enhance innovation across the rare disease ecosystem. It is designed to enhance collaboration and advance policy in this critical area by bringing together leading experts, policymakers, and patient representatives.

During HLM RARE, the EU Declaration on Rare and Complex Diseases will be formally presented. This political commitment aims to establish a sustainable Research and Innovation Ecosystem, solidifying the EU’s dedication to addressing the unique challenges faced by rare disease patients and their families.

HLM RARE will serve as a dynamic platform for collaboration and dialogue, uniting EU policymakers, industry leaders, patient groups, and researchers. This gathering will provide an invaluable opportunity to create synergies among key stakeholders, further supporting the advancement of research, improving access to innovative medicines, and ultimately enhancing the quality of life for all patients living with rare diseases in Europe.

For more information and to view the preliminary agenda, please click here.