Marie Sherlock (Dublin Central, Labour)
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1522. To ask the Minister for Health when the updated national rare disease strategy will be published; and if she will make a statement on the matter. [10822/25]

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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The National Rare Disease Steering Group was established in December 2023 and is chaired by Prof. Cecily Kelleher. 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 required to achieve this.

The National Rare Disease Steering Group are close to final sign-off on the new National Rare Disease Strategy and it is hoped it will be finalised in the coming weeks. The Strategy will then be presented to the Chief Medical Officer and Minister for Health for consideration following which the Strategy will be officially launched and implementation will commence.

Funding of €1.5m has been provided for rare diseases in Budget 2025 with an additional €5m provided to support the implementation of this strategy.