Summary
A proposal for a binding EU Regulation to create a comprehensive action plan for rare diseases, focusing on faster diagnosis, equitable treatment access, and coordinated research. 10 28.04.2026
Other
health
social policy
european union
administrative law
public administration
research and intellectual property
information technology and data processing
Key points
- Establishment of a binding European Regulation to create a unified action framework for rare diseases across the Union.
- Setting a target for patients to receive an accurate diagnosis within one year of their first medical consultation where possible.
- Coordinating newborn and prenatal screening programs to reduce inequalities in early detection between different regions.
- Facilitating the cross-border exchange of advanced therapies through hospital exemption mechanisms for patients unable to travel.
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