John Paul Phelan (Carlow-Kilkenny, Fine Gael)
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1126. 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 and published by Q4 2024; and if he will make a statement on the matter. [44424/24]

John Paul Phelan (Carlow-Kilkenny, Fine Gael)
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1127. To ask the Minister for Health if a report into the public consultation on developing a national rare disease strategy will be published; and if he will make a statement on the matter. [44425/24]

Stephen Donnelly (Wicklow, Fianna Fail)
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I propose to take Questions Nos. 1126 and 1127 together.

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 is expected to have finalised the new National Rare Disease Strategy by end-2024, with implementation commencing in early 2025.

A public consultation was carried out by the Rare Diseases and Long Covid Policy Unit to inform the Steering Group’s work on developing the new Rare Disease Strategy. The public consultation was closed in September 2024 and a draft report has been circulated to Steering Group members to inform the recommendations for the Strategy. It is expected that the public consultation will be included as an appendix in the new Rare Disease Strategy when published.

As part of Budget 2025, €1.5m was provided for rare diseases to support the provision of care through Ireland’s European Reference Networks (ERNs) for Rare Diseases, bolster the HSE’s National Rare Disease Office, and lay a strong foundation upon which to build following the publication of the new National Rare Disease Strategy.