HLM4Rare ’26

HLM4Rare 2026 builds on the momentum generated by the High-Level Meeting on a European Innovation and Care Ecosystem for Rare and Complex Diseases 2025, a landmark EU event that brought together political leaders, policymakers, European Reference Networks (ERNs), patients, researchers and industry to advance coordinated European action. The 2025 meeting led to the adoption of the Declaration on the European Innovation and Care Ecosystem for Rare and Complex Diseases, endorsed by 51 organisations. 

This year, HLM4RARE has convened eight multi-stakeholder Working Groups to translate the Declaration’s recommendations into concrete, evidence-based Plans of Action. These will detail tangible actions and a roadmap for action from 2027 onwards and will be launched and discussed at the next anual conference, which will be held in Brussels on 1-3 December, 2026. This conference will, once again, bring together from all over Europe political leaders, policymakers, European Reference Networks (ERNs), patients, clinicians researchers and industry.