The European Blueprint for Rare Diseases has been published by EURORDIS-Rare Diseases Europe and its partners, setting out prioritised, actionable proposals towards a dedicated EU Action Plan on Rare Diseases.
For the estimated 30 million people living with a rare disease across Europe, and their families, significant challenges remain. Despite progress in research, healthcare and policy, people affected by rare diseases continue to face gaps in diagnosis, treatment, care and support.
A coordinated European approach could help address these challenges by building on existing initiatives and infrastructure, strengthening collaboration across countries and creating a more consistent framework for progress.
Call for EU Action Plan
The European Blueprint for Rare Diseases brings together recommendations developed through collaboration across the rare disease community. It sets out proposals to inform a future EU Action Plan, with the aim of strengthening the European response to rare diseases and improving the lives of people affected by them.
The Blueprint represents an important step in the collective effort to translate shared priorities into coordinated action, bringing the needs and experiences of people living with rare diseases into European policy discussions.
RI’s contribution
Retina International is proud to have contributed to this collaborative effort. Our CEO, Avril Daly, participated in the Core Group, while our Head of Communications, Claire Duggan, contributed to the working group at the European Conference on Rare Diseases and Orphan Products (ECRD).
This work reflects the importance of collaboration between patient organisations and other stakeholders in shaping policies that respond to the needs of people living with rare conditions.
As a global alliance of patient-led organisations representing the retinal community, Retina International supports efforts to ensure that people affected by rare diseases have a meaningful voice in the decisions that shape research, healthcare and access to treatment.
Next Steps
The publication of the Blueprint provides a shared resource for continued engagement with European policymakers and other stakeholders. The next step is to bring its recommendations into policy discussions and build momentum towards a dedicated EU Action Plan on Rare Diseases.
An upcoming opportunity to advance this discussion will be the event “Research as Care: Why Rare Diseases Matter for Europe’s Future — Embedding Research and Innovation as Standard of Care in Rare Diseases”, taking place in Dublin on 13 November 2026, in association with Ireland’s 2026 Presidency of the Council of the EU. The event will bring together national representatives, policymakers, researchers, industry and patient representatives, with a dedicated panel addressing the Blueprint and the call for an EU Action Plan.
Retina International welcomes the continued collaboration of the rare disease community in advocating for a more coordinated European response that addresses the needs of people living with rare conditions.
