The Rare Disease Strategy: What does it mean for patients and doctors?

The Minister for Health has launched a five‑year National Rare Disease Strategy 2025–2030, a system‑wide plan published this week to improve the lives of the approximately 300,000 people in the State who live with a rare condition (defined in the EU as affecting fewer than five per 10,000 people). The strategy contains 11 recommendations that span governance, screening and diagnosis, care coordination across the life course, data and registries, education, research, and access to medicines. It sits explicitly within Sláintecare’s integrated‑care vision and follows the earlier 2014–2018 plan, while acknowledging unfinished business from that period. Funding to underpin early actions…