Campaign aims for diagnosis to save babies with rare diseases

Stock photo.

LIMERICK politicians are being asked to get behind a campaign to call for the urgent expansion of newborn heel prick screening services provided by the HSE.

Rare Diseases Ireland (RDI) has launched its 2024 Get Rare Aware campaign to bring together politicians, medical experts, and people living with rare diseases.

The new campaign is highlighting how babies born in Ireland are screened for only half the European average number of health conditions included in screening programmes in other EU countries.

According to RDI, 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 and quality of life.

This is because newborn screening enables doctors to diagnose babies early, and start treatment and onward care as early as possible – often before symptoms appear.

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The campaign is calling for the number of conditions newborn babies are screened for under the HSE National Newborn Bloodspot Screening Programme, more commonly known as the heel prick test, to be expanded from the current nine to the European average of 18 minimum.

The campaign is also highlighting how only one disease was added to Ireland’s newborn screening programme in the last five years.

A ‘Get Rare Aware’ information event for people living in the HSE Mid West Health Region, spanning Clare, Limerick, and North Tipperary, is taking place at 12.30pm on Wednesday, June 19. Anyone interested in attending can register to attend the free online event at