Updates

Ireland’s second National Rare Disease Strategy 2025–2030 (https://www.gov.ie/en/department-of-health/publications/national-rare-disease-strategy-2025-2030) was launched today by Minster of Health Jennifer Carroll MacNeill. The strategy was informed by extensive stakeholder engagement including a public consultation, a HIQA-led review of international rare disease plans, and a report from the National Rare Disease Patient Forum. The strategy makes 11 recommendations, including establishing a national rare disease registry, increased education and awareness among health professionals, and putting people with rare diseases at the centre of a well-organized and integrated service delivery model. Clinical Lead of the National Rare Diseases Office, Dr Atif Awan, commented that the strategy “lays the ground for real, lasting change. An emphasis on awareness, education, early diagnosis, and innovation will help us deliver more timely, equitable, and effective care.”