The High-Level Meeting (HLM) on European Research and Innovation for Rare Diseases will take place from 9 to 11 December 2025 in Brussels. This three-day meeting will bring together EU policymakers, researchers, patient advocates, healthcare providers, and industry leaders to shape the future of innovation and research in rare diseases.
The programme will focus on three main themes: advancing excellence in research, building pan-European infrastructure including the European Reference Networks (ERNs), and creating a coherent policy and funding framework for rare diseases.
A key outcome of the event will be the proposal for a European Declaration on Rare Diseases, aiming to establish a long-term, sustainable Research and Innovation Ecosystem supported by the Multiannual Financial Framework (MFF) 2028–2034.
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