Naoise Ó Cearúil (Kildare North, Fianna Fail)
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182. To ask the Minister for Health the measures being taken by her Department to increase awareness about sickle cell disease; and if she will make a statement on the matter. [34575/25]

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
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As the Deputy may be aware, a National Rare Disease Steering Group was established in December 2023 and have finished their work on the National Rare Disease Strategy 2025-2030. I have approved the plan, and it is currently waiting for cabinet approval. Historic 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.

Raising awareness about rare diseases is one of the core tenants of the new National Rare Disease Strategy. This includes increasing awareness amongst the public, healthcare professionals and policy makers about all rare diseases including Sickle Cell Disease.

Additionally, the Health Service Executive is currently working to develop a Model of Care for Haemoglobinopathies including sickle cell disease. Advocates for people with sickle cell disease are contributing to the development of the model of care and have highlighted raising awareness as one area for improvement.

This Model of Care document, which will provide a basis for planning services for people with haemoglobinopathies including those with sickle cell disease will support improving awareness of sickle cell disease. The HSE has advised that arising from a suggestion made by patients and patient advocates at a recent meeting it is planning to add a section on sickle cell disease to the HSE Health A to Z pages as an initial step in raising awareness.