John Paul O'Shea (Cork North-West, Fine Gael)
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186. To ask the Minister for Health if she will outline the supports available for people who suffer from rare diseases in Ireland; and if she will make a statement on the matter. [26354/25]

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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In Ireland, people living with rare diseases (PLWRD) can access specialist diagnostic and clinical services through national centres of expertise. These are available to Children and Adults. There are multidisciplinary national centres of expertise across Ireland. Many of these are affiliated with European Reference Networks (ERNs). ERNs are virtual networks of healthcare providers across the EU that collaborate and share knowledge and expertise on rare diseases.

The National Rare Diseases Office (NRDO) is the national coordination hub for ERNs and provides information to stakeholders and PLWRD regarding the availability and location of national centres of expertise and linked ERNs. In addition, NRDO provides an information line service where PLWRD can get reliable specific disease information, information on available clinical expertise, social care supports, patient support groups, research and clinical trials in Ireland and Europe.

In addition, the National Rare Disease Steering Group was established in December 2023 and was tasked with developing a new National Rare Disease Strategy for Ireland. The Steering Group have recently completed their work and the Strategy has been approved by the Chief Medical Officer. It is currently under my consideration for approval.

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. This funding, alongside the finalisation of the new National Rare Disease Strategy, will lay a strong foundation upon which to build into the future.