Developing a European Blueprint for Rare Diseases: How this work will unfold
EURORDIS-Rare Diseases Europe is leading a multi-stakeholder initiative to develop a European Blueprint for Rare Diseases – a detailed design for how rare disease policy can be structured, coordinated, and delivered in practice.
The Blueprint will set out, in concrete terms, what needs to happen, where, and by whom across policy, healthcare, research, and broader social systems. By examining and building on existing legislation and other initiatives, and by identifying gaps and fragmentation, it will provide a shared reference for policymakers and other key actors working to improve outcomes for people living with rare diseases.
The European Blueprint will be a unified framework built around two integrated pillars: it will set out the foundations for a future EU Action Plan on Rare Diseases, and define recommendations for the WHO European Region’s contribution to a Global Action Plan on Rare Diseases, as called for by the World Health Assembly resolution adopted in May 2025.
These two pillars taken together, the Blueprint’s development represents a strategic opportunity to define concrete actions on shared priorities, drive coordinated and high-impact EU-level efforts, and align European action with emerging global policy developments on rare diseases.