Under the auspices of the Polish Presidency of the Council of the EU, on April 10–11, the Ministry of Health, in cooperation with the European Economic and Social Committee and the Medical University of Warsaw, organized the conference “Towards an EU Action Plan on Rare Diseases”

This important event brought together around 500 participants — including government officials, leading researchers, medical professionals, and representatives from patient organizations, who made up one-third of all attendees. All of them were united by a shared purpose: to address the urgent need for a stronger, more coordinated EU policy on rare diseases.

Discussions focused on the creation of comprehensive national strategies, the value of cross-border cooperation, and the key role played by European Reference Networks and research alliances. There was a clear consensus: Europe must move forward with a unified, Pan-European approach. A common EU Action Plan is essential to harmonize efforts across all 27 Member States, enhancing cooperation and aligning frameworks for data sharing, access to medicines, clinical trials, medical devices, and innovative treatments.

At the heart of every discussion was one goal: to make a meaningful, lasting difference in the lives of people living with rare diseases. These people and their families deserve to be seen, heard, and cared for — no one should be left behind.

Małgorzata Bogusz, Member of the European Economic and Social Committee (EESC) and President of the Institute for Social Policy Development, also delivered a speech during the event. She outlined the general operations of the EESC, as well as highlighted the organization’s specific initiatives targeting rare diseases, thereby helping to shape EU health policy.

We are enthused that this conference took place. It was more than just a conference — it was a call to action.

Our heartfelt thanks to Minister Urszula Demkow, the European Economic and Social Committee, and the Medical University of Warsaw for organizing the conference, as well as ERDERA, National Forum for Rare Disease Treatment ORPHAN Krajowe Forum ORPHAN, and many other organizations for their engagement in this inspiring initiative.