Roderic O'Gorman (Dublin West, Green Party)
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189. To ask the Minister for Health if she will consider the provision of additional funding to appoint clinical psychologists dedicated to supporting adults with epidermolysis bullosa. [21349/25]

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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An 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. However, this care pathway is currently not fully implemented.

The Department of Children, Equality, Disability, Integration and Youth have confirmed that €3m was ring-fenced in the Budget 2025 for targeted services for children under a number of projects. As part of this €3m funding, €125,000 in core-funding has been made available to Debra Ireland, a charity supporting those living with EB in Ireland, this year and going forward.

With respect to the provision of an additional Epidermolysis Bullosa (EB) clinical psychologist, this is an identified need for the service. Currently, an EB clinical psychologist (0.25 WTE) is available for EB patients when they are in crisis.

The Deputy will be aware that €1.5 million has been allocated to rare diseases as part of budget 2025, with an additional €5 million for the implementation of the new 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. support the provision of care through Ireland’s European Reference Networks (ERNs) for Rare Diseases, bolster the HSE’s National Rare Disease Office, and lay a strong foundation upon which to build following the publication of an updated National Rare disease Strategy. As part of the €5m funding, €700,000 was specifically allocated for EB services. My Department and the HSE are continuing to engage with the stakeholders to ensure that this funding is utilised to deliver the best possible impact for EB services and those living with EB in Ireland.