Dáil Éireann Debate, Tuesday - 3 March 2026
922. Deputy John Paul O'Shea asked the Minister for Health if the Oversight Implementation Group for the National Rare Disease Strategy has been established, given that the Strategy was published in August 2025; and if she will make a statement on the matter. [16950/26]
View answerI thank the Deputy for the question. I remain committed to the implementation of the National Rare Disease Strategy 2025-2030 and its vision to ensure that all people living with a rare disease have access to equitable, inclusive, safe and cross-sectoral care throughout their life journey that will enable them to reach their full potential and to live their best lives. Since the launch of the Strategy, progress has been made in a number of areas including:
• The Implementation Oversight Group held its first meeting in February and meetings are expected to be quarterly. Two people with lived experience of rare diseases among its membership and additional patient partners will be invited to support the strategy’s wider implementation.
• An implementation plan is in development and will be published in 2026, regular updates will be shared with the rare diseases community.
• The first in a series of symposia on Rare Diseases will take place in Galway on 21 May and will focus on improving diagnostic, care pathways and supports.
• A Rare Diseases Education Programme has been developed by the Health Service Executive’s National Rare Disease Office (NRDO) and is available to all healthcare professionals. This is helping improve awareness and knowledge of rare disease among healthcare professionals.
• Work on the expansion of the national newborn bloodspot screening programme continues, with screening for both Severe Combined Immunodeficiency (SCID) and Spinal Muscular Atrophy (SMA) expected to commence in April this year.
Additional resources have been provided to support greater care coordination for patients improving the patient experience by supporting them in navigating the health service.
