EURORDIS 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, spanning healthcare, research, and broader social systems. The Blueprint aims to tackle persistent gaps in delayed diagnosis, unequal access to care, limited treatment options, and barriers to full social participation, by aligning efforts, avoiding duplication, and setting clear priorities, roles, and measures for accountability.
It will be built around two linked pillars: foundations for a future EU Action Plan on Rare Diseases, and recommendations to support the WHO European Region’s contribution to a Global Action Plan following the World Health Assembly resolution adopted in May 2025. The Blueprint will be presented at the European Conference on Rare Diseases and Orphan Products (ECRD 2026), taking place in Prague in June 2026.
Find out more about the Blueprint and how to get involved.
Join the European Regional Task Force on Rare Diseases
EURORDIS is inviting patient organisations, advocates, and other stakeholders from across the WHO European Region to join the European Regional Task Force on Rare Diseases, a group that will gather evidence, experience, and perspectives to help shape the European Blueprint for Rare Diseases.
The Task Force is being developed in collaboration with Rare Diseases International and will contribute concrete recommendations to strengthen rare disease policy across Europe to the European Blueprint for Rare Diseases.
The call for expressions of interest is now open – any interested organisations or individuals can use this form to apply. The Task Force will then launch with a webinar on 6 March.
Learn more about the Task Force.
(source: OrphaNews 10 February 2026)