Draft Report with recommendations to the Commission on a European Union rare disease action plan
The European Parliament sets priorities for a more coordinated EU approach to improve rare disease care and reduce inequalities across Member States
A draft report in the European Parliament's Committee on Public Health (SANT), led by MEP Nicolás González Casares, calls on the European Commission to propose legislation establishing a comprehensive and binding European rare disease action framework to tackle fragmentation and inequalities across diagnosis, treatment access, research coordination, data infrastructure, patient support and governance.
The draft highlights the strong added value of coordinated EU action and underlines the central role of European Reference Networks (ERNs) as key cross-border infrastructures for expertise and collaboration. It calls for strengthened support and sustainable funding for ERNs, alongside improved integration of research, data, and clinical care, with the aim of accelerating innovation and ensuring more equitable access to diagnosis and treatment for patients living with rare diseases across Europe.
The report sets out the European Parliament's recommendations to the European Commission, calling for the development of a comprehensive EU-level action plan to address persistent challenges in the rare disease field, including inequalities in diagnosis, access to care, and fragmented research efforts across Member States.
Read the full draft report HERE.
2025/2130(INL)
Committee on Public Health
Rapporteur: Nicolás González Casares