“Towards an EU action plan on rare diseases: national plans and european cooperation”
March 2025
The The European Economic and Social Committee (EESC), in conjunction with the Polish Ministry of Health and the Medical University of Warsaw, will be holding a two-day conference entitled Towards an EU Action Plan on Rare Diseases on 10-11 April, at the Medical University in Warsaw.
The conference will focus on shaping a European policy framework for rare diseases that complements existing legislation and supports the development of a comprehensive European Action Plan. The aim is to unite stakeholders across both national and continental levels, foster better cooperation and communication within the sector, and promote a more efficient exchange of resources to meet the needs of patients living with rare diseases.
On Day One, Virginie Bros-Facer, Chief Executive Officer of EURORDIS-Rare Diseases Europe, will moderate Session 5: Towards reducing the time for an early and accurate diagnosis for patients with rare diseases, helping to spotlight the importance of timely diagnosis from a patient-centred perspective.
The conference will be streamed live, providing an opportunity for a broader audience to follow the discussions online, and it will be available on the “Webstream” section of the EESC event page.
Day Two (11 April) will feature a side event titled “Bridging Research and Care for Patients”, specifically aimed at clinicians, researchers, and patients. The event is organised under the patronage of the Polish Ministry of Health and the European Economic and Social Committee, with the support of ERDERA, MRA (ABM), EURORDIS, and Krajowe Forum Orphan. Dr. Bros-Facer will also deliver opening remarks on Day Two, reflecting EURORDIS’s continued commitment to advancing care and policy for people living with rare diseases.