Europe has spent decades building its rare disease ecosystem. Why does it still need a plan? November 2026

Europe has spent decades building its rare disease ecosystem. Why does it still need a plan? November 2026 Over the past two decades, the EU has made considerable progress on rare diseases, establishing specialist healthcare networks, supporting cross-border research programmes, developing shared information systems and introducing incentives for orphan medicine development. Yet despite these achievements, millions of Europeans living with rare diseases continue to face lengthy diagnostic delays, fragmented care and unequal access to treatment. The challenge is no longer simply to develop new initiatives, but to ensure that Europe’s existing efforts work together more effectively to address these persistent gaps. https://www.eurordis.org/questions-on-european-blueprint/ In October, following 10 months of co-development with people living with rare diseases and stakeholders from across the rare disease community, EURORDIS-Rare Diseases Europe launched its European Blueprint for Rare Diseases. The Blueprint sets out a shared vision for a more coordinated European response to rare diseases, proposing concrete priorities and actions to shape a future EU Action Plan on Rare Diseases. But what exactly does the Blueprint propose, why is an EU Action Plan needed, and how can we turn this shared vision into reality? Our latest Q&A article answers five key questions about the Blueprint, including how a future EU Action Plan could build on existing European and global initiatives.