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Dáil
‹ Ceisteanna ar Reachtaíocht a Gealladh - Questions on Promised Legislation

Newborn screening for rare diseases

Summary

Deputy O'Reilly raises the case for expanding newborn screening for rare conditions, citing families whose children suffered delayed diagnoses and treatment. The Minister of State says he will take the matter to the chief medical officer for a response.

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.

Comment on this
Jim Daly Minister of State at the Department of Health Fine Gael

I am happy to take up the matter with the chief medical officer in the Department of Health in order to get a response for the Deputy.

Comment on this