Rare Diseases
Dail Éireann — 2026-05-20
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Mary Butler (FF), Waterford

I reiterate that the HSE has advised that it suggested that the applicant's referring consultant engage with the relevant ERN, the European reference network on rare multisystemic vascular diseases. The ERN enables specialists in Europe to discuss cases of patients affected by rare, low-prevalence and complex diseases, providing advice on the most appropriate diagnosis and the best treatment available. Ireland is an active participant in ERN, with 18 recognised centres involved across a range of networks. Engagement with ERNs is an important step in ensuring that all appropriate EU-based expertise and treatment options have been explored.
That said, the Department recognises, and I recognise, having listened to the Deputy, how difficult this individual case is for the applicant and her family. I assure the Deputy that officials in the Department of Health will continue to engage with the HSE and seek updates to ensure that every possible avenue within Ireland and the EU that may be open to the applicant and her family has been fully explored. As I said, I will bring to the attention of the Minister the exceptional of circumstances clause. I have no doubt she is well aware of it, but I will take that to her today and see if any further supports can be provided.

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Record URI: https://data.oireachtas.ie/akn/ie/debateRecord/dail/2026-05-20/debate/main
Retrieved: 2026-09-28T05:50:47+00:00
Sitting date: 2026-05-20