Brendan Griffin (Kerry, Fine Gael)
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470. To ask the Minister for Health to provide an update on the work of National Rare Disease Steering Group; whether the new national rare disease strategy will be finalised by Q4 2024; when the national rare disease strategy will be published; and if he will make a statement on the matter. [45747/24]

Stephen Donnelly (Wicklow, Fianna Fail)
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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 Steering Group has met twelve time since its establishment and is expected to have finalised the new National Rare Disease Strategy by end-2024, with implementation commencing in early 2025.