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Dáil
‹ Ceisteanna ar Pholasaí nó ar Reachtaíocht - Questions on Policy or Legislation

Rare disease plan

Summary

Deputy Naughten asked when the long-promised revised national rare disease plan would be published. The Taoiseach said he would check with the Minister for Health and reply directly.

Approximately one in 12 people in Ireland will at some stage in life be affected by a rare disease. When family members, many of whom are carers, are included, this means approximately 825,000 Irish people are impacted by a rare disease. The Taoiseach will recall that the programme for Government published in 2020 contained a commitment to deliver a revised national rare disease plan to replace the one that lapsed in 2018. As he is aware, 29 February next is Rare Disease Day. In light of the fact that the Government made a commitment four years ago to introduce a new plan and that the forthcoming Rare Disease Day will be the last one for this Government, will the updated plan be published and available by that date?

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Leo Varadkar The Taoiseach Fine Gael

I thank the Deputy for raising this important issue. I know he has a particular interest in the issue of rare diseases and has raised it many times in the Chamber. I am not sure what the date is for publication of the new plan but I will check with the Minister for Health and revert to the Deputy directly by correspondence.

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