In December 2025, HLM RARE 2025 brought together EU policymakers, ERNs, patient organisations, researchers and industry leaders in Brussels to advance a stronger European ecosystem for rare and complex diseases.
A key milestone was the launch of the Declaration on a European Innovation and Care Ecosystem for Rare and Complex Diseases, a political commitment structured around 8 priorities, from an EU Action Plan on Rare Diseases to strengthened ERNs, equitable access to diagnostics and treatments, real-world evidence integration, and sustainable funding (see more below).
With more than 60 organisations signing the Declaration and over 500 participants engaged , HLM RARE demonstrated clear momentum and shared ambition across the community.
Now, the initiative evolves. In 2026, HLM RARE transitions into HLM4RARE, the Health Leadership Mission for Rare Diseases. The focus shifts from political alignment to delivery: 8 multi-stakeholder Working Groups will develop concrete, targeted Plans of Action to turn the Declaration’s recommendations into measurable impact.
From vision to implementation, the next phase begins!
For more details about the HLM4RARE project, consult this document : https://ern-ithaca.eu/wp-content/uploads/2026/03/9h15-HLM4RARE_ERN-Coordinators-10-Feb-meeting_final.pdf