Written answers

Tuesday, 8 July 2025

Photo of David CullinaneDavid Cullinane (Waterford, Sinn Fein)
Link to this: Individually | In context

763. To ask the Minister for Health the status of the new rare disease strategy; and if she will make a statement on the matter. [37134/25]

Photo of Jennifer Carroll MacNeillJennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
Link to this: Individually | In context

The National Rare Disease Steering Group was established in December 2023. The Steering Group was tasked with developing a new Rare Disease Strategy for Ireland that set out the vision for rare disease services in Ireland and the actions that were required to achieve this.

The Steering Group finalised the National Rare Disease Strategy in the last number of weeks. I have approved the Strategy and it has been brought to Government for approval. It is hoped that a launch will take place in the coming weeks with implementation commencing immediately afterwards.

Funding of €1.5m was provided in Budget 2025 for the development of supports and services for people living with a rare disease in Ireland, with an additional €5m provided to support the implementation of this Strategy.

Comments

No comments

Log in or join to post a public comment.