Pádraig O'Sullivan (Cork North-Central, Fianna Fail)
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135. To ask the Minister for Health if she will provide an update on the National Rare Disease Strategy; the status of each recommendation; if the implementation oversight group has been established; and if she will make a statement on the matter. [63427/25]

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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As the Deputy will be aware, I launched the new National Rare Disease Strategy 2025-2030 on August 27th, 2025. The Strategy outlines 11 recommendations that seek to take a life course approach to meet the needs of the estimated 300,000 people living with a rare disease in Ireland.

As part of this, it was recommended that an Implementation Oversight Group (IOG) would be established to oversee the implementation of the Strategy, providing strategic guidance and monitor progress at a national level. This process is underway.

Letters of invitation have been issued to key stakeholders inclusive of officials within the HSE and the Department of Health to be appointed membership to the IOG, or to nominate an appropriate representative.

To continue building upon the strong foundation of patient partnership that was established during the Strategy’s development, two patient representatives will be appointed to the IOG. It is expected that an Expression of Interest will be published shortly, inviting expressions from interested parties to become members.

In regard to the status of each recommendation, an Implementation Plan that will outline the necessary actions required to achieve the Strategy’s recommendations will be developed and presented to the IOG for approval.

The Department, in conjunction with the HSE, remain focused on developing and delivering the care and supports required to meet the needs of people living with a rare disease.