Pádraig O'Sullivan (Cork North Central, Fianna Fail)
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2191.To ask the Minister for Health if funding will be ring-fenced in budget 2025 for patients living with epidermolysis bullosa ED in order that they can access vital care that adapts to their changing needs; and if he will make a statement on the matter. [31816/24]

Stephen Donnelly (Wicklow, Fianna Fail)
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In February 2023, on Rare Diseases Day, I announced a plan to develop a revised National Rare Disease Plan, in line with the commitment in the Programme for Government.

Since then, a Rare Disease Policy unit has been established in my department. This unit liaises with the National Rare Disease Office in the HSE and relevant stakeholders.

A National Rare Disease Steering Group was established in December 2023, and it has met nine times since it first convened.

The Steering Group has been tasked with developing the new National Rare Disease Strategy and an associated Implementation Plan.

The new Strategy will set out the vision for Rare Disease services in Ireland and the actions required to achieve this, while focusing on delivering positive change for people living with a rare disease in Ireland.

Funding for services is considered as part of the yearly Estimates process. Decisions on future funding for Rare Diseases services will be made in the context of the upcoming Estimates process for 2025.