ArticleEuropean journal of public health2026
Identifying barriers and policy priorities for rare disease research in underrepresented European countries.
Article in European journal of public health, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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12 authors.
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Abstract
The European Joint Programme on Rare Diseases successfully advanced rare disease research and also revealed challenges for underrepresented countries, those less frequently holding or leading grants. This study aimed to survey Rare Disease researchers in these countries, identify barriers to participation in research, and propose solutions. A modified Delphi approach without formal consensus thresholds of 186 respondents highlighted fragmented or outdated policies and heterogeneous funding. Nearly all participants prioritized the need for EU-wide policies defining minimum quality standards for Rare Disease care. Key priorities include access to genetic testing and essential services to support uniform care and shared research capacity.
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