Written answers

Tuesday, 15 November 2022

Department of Health

Disease Management

Photo of Peadar TóibínPeadar Tóibín (Meath West, Aontú)
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502. To ask the Minister for Health the definition of "rare disease" utilised by his Department and the HSE; and the number and names of the rare diseases entailed under these respective definitions provided in tabular form. [56155/22]

Photo of Stephen DonnellyStephen Donnelly (Wicklow, Fianna Fail)
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A disease or disorder is defined as rare in Europe when it affects less than 1 in 2000 people. There are approximately 8,000 known rare diseases; 80% of rare diseases are of genetic origin and are often chronic and life-threatening. Up to 1 person in 12 in Ireland may have a rare disease at some stage in their life. Approximately 300,000 persons in Ireland are living with a rare disease.

As this question also relates to service matters, I have asked the Health Service Executive to respond to the deputy directly on this aspect as soon as possible.

Photo of Peadar TóibínPeadar Tóibín (Meath West, Aontú)
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503. To ask the Minister for Health the number of persons with rare disease in Ireland as of 2022, by county and by rare disease type in tabular form. [56156/22]

Photo of Stephen DonnellyStephen Donnelly (Wicklow, Fianna Fail)
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As this is a service matter, it has been referred to the HSE for direct reply.

Photo of Cathal CroweCathal Crowe (Clare, Fianna Fail)
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504. To ask the Minister for Health if a copy of the business case made for a national diabetes registry can be made available (details supplied); and if a timeline for the delivery of the same can be outlined. [56162/22]

Photo of Stephen DonnellyStephen Donnelly (Wicklow, Fianna Fail)
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Budget 2023 provides funding for a number of initiatives aimed at improving diabetes care, including commencing the development of a National Diabetes Register.

As part of the budgetary process, a business case was received by the Department setting out the proposal for the delivery of the registry. Following approval of funding, the HSE is currently in the process of revising the business case.

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