Ceisteanna ó Cheannairí - Leaders' Questions
Dail Éireann — 2023-10-03
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Leo Varadkar (FG), Dublin West

As I said earlier, rare diseases taken all together are not that rare but some rare diseases are very rare. When we have conditions that are one in a million or one in 5 million, it is not possible for us to treat those patients on our own; we have to co-operate internationally and particularly at European level. We definitely need better patient registers. There are many conditions for which we do not have a list of all the patients who have the condition. That makes research in particular very difficult. That is not dependent on there being electronic health records. There were national patient registers long before there were electronic records but obviously one would help the other. I do not know the detail as to where that is at the moment. I think there is a requirement for specific legislation in relation to that. I will ask the Minister for Health to come back to Deputy Naughten with a more detailed reply.

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Record URI: https://data.oireachtas.ie/akn/ie/debateRecord/dail/2023-10-03/debate/main
Retrieved: 2026-08-14T04:52:13+00:00
Sitting date: 2023-10-03