Identifying barriers and policy priorities for rare disease research in underrepresented European countries - PubMed
5 hours ago
- #European health policy
- #research barriers
- #rare disease research
- The European Joint Programme on Rare Diseases advanced research but revealed challenges for underrepresented countries, which are less frequently holding or leading grants.
- A modified Delphi approach with 186 respondents identified barriers including fragmented or outdated policies and heterogeneous funding for rare disease research.
- Nearly all participants prioritized EU-wide policies to define minimum quality standards for care, highlighting access to genetic testing and essential services to support uniform care and shared research capacity.