Pádraig O'Sullivan (Cork North-Central, Fianna Fail)
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630. To ask the Minister for Health for an update on the implementation of the new national rare disease strategy, given that the strategy is currently in draft form and awaiting publication; and if she will make a statement on the matter. [4290/25]

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 have been tasked with developing a new Rare Disease Strategy for Ireland that sets out the vision for rare disease services in Ireland and the actions that are required to achieve this.

The Steering Group is expected to have finalised the new National Rare Disease Strategy in the coming weeks with a view to officially launch the Strategy shortly afterwards. The Steering Group recommends an Implementation Oversight Group (IOG) be established. The IOG will develop an implementation plan outlining the actions required to deliver on the steering groups recommendations.

Funding of €6.5m has been provided in Budget 2025 to support the implementation of this strategy and the development of supports and services for people living with a rare disease in Ireland. This funding, alongside the finalisation of new National Rare Disease Strategy, will lay a strong foundation upon which to build into the future.