Dáil Éireann Debate, Tuesday - 14 October 2025
912. Deputy Pádraig Rice asked the Minister for Health to provide an update on the National Rare Disease Strategy; the status of implementation of each of its recommendations respectively; the timeline for establishing an Implementation Oversight Group and the development of an implementation plan; and if she will make a statement on the matter. [55473/25]
Amharc ar fhreagraAs the Deputy will be aware, in December 2023, the Minister for Health established the National Rare Disease Steering Group which was tasked with developing a new National Rare Disease Strategy for Ireland. The National Rare Disease Strategy was launched on August 27th, 2025.
The Strategy outlines 11 recommendations that seek to take a life course approach to meet the needs of the estimated 300,000 people living with a rare disease in Ireland. As part of this, it was recommended that an Implementation Oversight Group (IOG) would be established to oversee the implementation of the Strategy, providing strategic guidance and monitoring progress at a national level. This includes the establishment of thematic working groups, as required.
Work is ongoing to finalise membership to the IOG and these working groups. My Department is engaging with officials within the relevant Departments to appoint appropriately senior representatives within these working groups.
The HSE are working on an Implementation Plan outlining the necessary actions that are required to achieve the Strategy's recommendations. Once complete, this will be presented to the IOG for approval.
