Rare Diseases Ireland (RDI) is calling on people to ‘Get Rare Aware’.
An information event for those living in the HSE Dublin and South East Region takes place at 12:30pm today (Tuesday, 23rd April).
The campaign aims to bring together politicians, medical experts and people living with rare diseases, including locally, to call for the urgent expansion of newborn heel prick screening services provided by the HSE.
The National Newborn Bloodspot Screening Programme (NNBSP), more commonly known as the heel prick test, which is part of the HSE National Children’s Screening Programme, screens for nine conditions in comparison with the European average of 18 conditions minimum.
The RDI says screening for an increased number of conditions would mean that approximately 200 babies born in Ireland each year could have their lives saved or have better health for life because newborn screening enables doctors to diagnose babies early and start treatment and onward care as early as possible and often before symptoms appear.
You can register to attend the free, public online event at getrareaware.ie.
Speaking at the launch of the Get Rare Aware Campaign at Government Buildings,CEO of Rare Diseases Ireland Vicky McGrath said: “For our 2024 Get Rare Aware campaign, we are calling on TDs, senators and MEPs, including in Carlow, to take urgent action to expand the number of conditions screened for under newborn heel prick test screening services in Ireland. Ireland needs a comprehensive newborn screening programme that is adequately resourced to enable expansion and ensure that babies born in Ireland, including to parents living in Carlow, are screened for at minimum the European average number of 18 conditions. Newborn screening is a programme that would benefit further from European collaboration to ensure that babies born across the EU receive equal care.
“The limited services and resources available for expansion of newborn screening dramatically impacts the life of children born in Ireland, and particularly those born with a rare disease, including in Carlow. Action can be taken when health conditions tested for in newborn screening are identified early. The wellbeing of whole families will also be improved as delayed diagnosis has a significant financial and psychological impact on families.”
Meanwhile, you can hear Vicky’s chat with our Brian Redmond on The KCLR Daily here;
