Last week, the High-Level Meeting on a European Innovation and Care Ecosystem for Rare Diseases (HLM Rare 2025) hosted in Brussels, from 9-11 December 2025, by the European Reference Networks, MEP Vytenis Andriukaitis (S&D, Lithuania) and Prof. Maurizio Scarpa (President of the Brains for Brain Foundation and MetabERN Coordinator), marked a landmark moment for the 30 million people living with a rare disease in Europe.
HLM Rare 2025 brought together ERN Coordinators, Members of the European Parliament, patient advocates, leading researchers, policymakers, and industry leaders, creating a valuable opportunity for collaboration. It facilitated dialogue among multiple stakeholders at a time when policies addressing rare diseases are more crucial than ever for the rare disease community.
The meeting highlighted the shared commitment for a common cause – to improve the quality of life for people living with Rare Diseases and their families. Through high-level dialogues, interactive sessions, and joint reflections, participants demonstrated a collective determination to bridge science, patient advocacy and policy, foster mutual understanding, and co-create solutions to complex challenges. By strengthening the already established ecosystem and agreeing on common priorities, the meeting laid a solid foundation for sustained collaboration and a continued commitment to advancing rare diseases research and innovation.
As the meeting concluded, there was a strong sense of shared purpose and momentum. The HLM RARE 2025 has launched Declaration on the European Innovation and Care Ecosystem for Rare and Complex Diseases, showcasing a political and strategic commitment 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.
The Declaration sets out a shared vision with clear strategic priorities, and provides a strategic Roadmap for Priority Action to revitalise the innovation and care ecosystem. It serves as a critical document that mobilises key stakeholders to re-establish the EU’s pivotal leadership role in rare diseases and life sciences globally.
