Michael Cahill (Kerry, Fianna Fail)
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809. To ask the Minister for Health if she will host a rare disease conference; and if she will make a statement on the matter. [37420/25]

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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The National Rare Disease Steering Group was established in December 2023. The Steering Group was tasked with developing a new Rare Disease Strategy for Ireland that set out the vision for rare disease services in Ireland and the actions that were required to achieve this.

The Steering Group finalised the National Rare Disease Strategy in the last number of weeks. I have approved the Strategy and it has been brought to Government for approval. It is expected that a launch will take place in the coming weeks with implementation commencing immediately afterwards.

Funding of €1.5m was provided in Budget 2025 for the development of supports and services for people living with a rare disease in Ireland, with an additional €5m provided to support the implementation of this Strategy. This includes raising awareness in the clinical and public domains of rare diseases.

With regard to hosting a Rare Disease Conference, there is currently nothing planned as the priority now is on moving into the important initial implementation stages. It is envisioned that with the publication and implementation of the new strategy increased awareness of rare diseases will follow as a result. Specific events to raise awareness may be planned over its life cycle.