86 per cent of parents want to know if their newborn has a rare condition, even if it’s not yet treatable
May 25th, 2022
Rare Diseases Ireland has published a new research study which reveals that 86 per cent of Irish parents want to know if their newborn has a rare condition, even if it is not yet treatable. 65 per cent of parents are in favour of screening newborns for as many rare conditions as possible. The study, which is based on a national poll of 1,000 respondents conducted by iReach Insights, has also found that 83 per cent of parents think that families with newborn babies with an increased risk of a rare condition should be able to ask for specific screening tests to be included on the screening panel to ensure early diagnosis. “Ireland was one of the first countries in the world to introduce a national newborn screening programme in 1966. We are now languishing amongst the lowest ranked countries in the EU. Italy screens for 45 conditions while we currently screen for only 8 conditions. Our failure to keep pace is costing Irish children their lives,” said Vicky McGrath, CEO of Rare Diseases Ireland. More information on the study here here.
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