Dáil Éireann Debate, Tuesday - 10 February 2026
1193. Deputy Paul McAuliffe asked the Minister for Health to outline her plans to expand supports for those with epidermolysis bullosa and their families; and if she will make a statement on the matter. [10344/26]
Amharc ar fhreagraAn EB care pathway, approved by the HSE Clinical Forum under the Chief Clinical Officer (CCO) as a national paediatric and adult care pathway in May 2023, sets out the recommended steps in care for people living with EB. I am advised that the HSE is actively developing a service model for Epidermolysis Bullosa (EB) and are directly engaging with relevant patient representative groups as part of this process.
The Department of Children, Equality, Disability, Integration and Youth confirmed that €3m was ring-fenced in Budget 2025 for targeted services for children under a number of projects. As part of this €3m funding, €125,000 in core-funding was made available to Debra Ireland in 2025 and going forward, a charity supporting those living with EB in Ireland.
The Deputy may also be aware that €1.5 million was allocated to rare diseases as part of budget 2025, with an additional €5 million for the implementation of the new National Rare Disease Strategy for Ireland. This funding will be utilised for the benefit of all people living with a rare disease including those living with EB.
