Ireland has unveiled a new national strategy aimed at transforming the diagnosis and care of the estimated 300,000 people in the country living with rare diseases. According to The Irish Times, the National Rare Disease Strategy 2025-2030, announced by Minister for Health Jennifer Carroll MacNeill, outlines sweeping changes to deliver faster, more equitable, and more effective care for those affected by life-threatening or chronically debilitating conditions.
Rare diseases, defined as those affecting no more than five in 10,000 people, are mostly genetic and often lack established treatment pathways due to their low individual prevalence. However, collectively, they impact as much as 6% of the European Union population, making them a significant public health concern.
The new strategy introduces 11 key recommendations focused on early diagnosis, improved treatment access, and enhanced support for patients and families. Central to the plan is the expansion of the National Rare Diseases Office, which will lead the implementation of these recommendations and ensure robust governance, planning, and delivery of care at both national and local levels.
A cornerstone of the strategy is the creation of a National Rare Disease Registry. This registry will strengthen service planning, coordination, and monitoring, helping to ensure that individuals with rare diseases are identified early and receive the care they need. The strategy also calls for increased education and awareness among healthcare professionals, aiming to close gaps in knowledge and foster more timely referrals and diagnoses.
Further, the plan emphasizes greater international collaboration, particularly through integrating European reference networks into the Irish healthcare system. This approach will connect Irish clinicians and patients to specialized expertise and resources across Europe, improving access to innovative treatments and best practice care.
Minister Carroll MacNeill highlighted the government’s commitment to rare disease care with “unprecedented” funding: €6.5 million earmarked for this year and €8 million for 2026. The funding will support the strategy’s initiatives, expand services, and promote research and innovation.
