ECRD 2026: Rare Diseases in a Changing & Competitive Europe
ECRD is the largest, patient-led policy-shaping conference for rare diseases in Europe. The event is an instrumental tool for advancing policy objectives that improve the lives of people living with a rare disease. The overarching title of ECRD 2026 is: Rare Diseases in a Changing & Competitive Europe: Shaping policies to address the unmet needs of people living with rare diseases.
Rare disease research has long driven breakthroughs in more common conditions, reinforcing Europe’s role as a global leader in biotechnology and precision medicine. Investing in this field is not only a moral imperative—it is a strategic move to boost Europe’s competitiveness in the life sciences. This is especially crucial in the context of the deployment of the Life Science Strategy and of the adoption of the Biotech Act.
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 deliver 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.
