HLM4Rare ’26 – hlm4rare

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. ecosystems, Europe strengthens its entire European Health Union, improving resilience, competitiveness and equitable access to innovation for all.

HLM4Rare 2026 is the next step: transforming political commitments into concrete, evidence-based policy proposals. Because of their complexity, rare diseases represent the ideal strategic laboratory for designing integrated health solutions, from cross-border care and interoperable data systems to innovation in advanced therapies and clinical trials. By strengthening rare disease ecosystems, Europe strengthens its entire European Health Union, improving resilience, competitiveness and equitable access to innovation for all.

ABOUT THE WORKING GROUPS

This year, HLM4RARE will convene 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 conference, which will be held in Brussels on 1-3 December, 2026.