Dáil debates
Thursday, 30 May 2019
Ceisteanna ar Reachtaíocht a Gealladh - Questions on Promised Legislation
12:25 pm
Louise O'Reilly (Dublin Fingal, Sinn Fein) | Oireachtas source
The rare disease plan recommends that we expand the number of conditions for which newborn babies are screened. Yesterday, in the audiovisual room, at a briefing organised by Deputy Brady, we heard from the fathers of two children whose conditions could have been diagnosed at birth. These children, Cathal and Ciarán, known locally as Cogs and Kiwi, and a baby named Juniper have become gravely ill. Their parents have been to hell and back just to get a diagnosis and to hell and back again to get treatment. This could have been prevented if their children had been screened at birth. Currently, we only screen for eight conditions. The Government's rare disease plan recommends that this should be increased. Does the Government accept the recommendations relating to the rare disease plan, which is nearly six years old, and when will they be implemented? We are not talking about a massive spend but we are talking about a great benefit for these children and their families.
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