Rare Diseases in a Changing & Competitive Europe 2026

ECRD 2026 will be a pivotal moment for rare disease policy in Europe, taking place five years after the launch of Rare2030 and midway to the 2028 WHO Global Plan target.  

The event will bring together stakeholders to assess progress and support a community-led effort to co-develop an EU Action Plan—or Strategic Framework—for Rare Diseases. It will engage the rare disease community in “planning for a Plan”. ECRD aims to build cross-sectoral co-ownership of a shared vision to reflect on European good practices and unmet needs, developing recommendations for EU and global rare disease policy.  

The conference is set to present a European Blueprint for Rare Diseases —a practical document that consolidates existing initiatives, identifies gaps, and sets out concrete steps to accelerate progress. By translating shared intentions into measurable outcomes, ECRD 2026 will help create the conditions for lasting change—turning collective ambition into tangible results for people living with rare diseases.