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06 Sept 2025

The Rock of Cashel is lit up tonight in support of Rare Ireland Family Support Network

The Rock of Cashel is lit up tonight in support of Rare Ireland Family Support Network

The Rock is lit up tonight in support of Rare Ireland Family Support Network.

Reporter:

Reporter

29 Feb 2024 8:33 PM

The Rock of Cashel joins many landmarks across the country lighting up tonight in support of Rare Ireland Family Support Network. The 'Rock' is lit in an illuminating blue and pink for Rare Disease Day. Over 300,000 people are affected by Rare Diseases in Ireland as well as their family members. Many rare diseases do not have cures and we are trying to help raise greater awareness in whatever way possible.
Many Tipperary families have been affected by Rare Diseases and now there is a national collective to help find support in for many in need. The National Rare Diseases Office - currently based in the Mater Misericordiae University Hospital, Eccles St, Dublin 7 - is the co-ordination ‘hub’ for clinical rare diseases expertise in Ireland. The office was established in 2015 and is staffed by healthcare professionals who have significant experience working with people affected by rare diseases. It provides current, reliable information about genetic and rare diseases to patients, families and health and research professionals.
An example of this is Phenylketonuria, or PKU which - according to the https://pku.ie/ website - is a rare genetic disorder that affects a person’s metabolism. If untreated, PKU results in permanent brain damage. Screening for PKU takes place for all newborn babies in the Republic of Ireland, and across the UK and Europe. In Ireland approximately 1 in every 4,500 babies is diagnosed with PKU – a relatively high incidence rate, compared to the UK where it is believed to be closer to 1 in every 12,000 babies. For those in need or for those wishing to find out more you can do so by contacting the Rare Ireland Family Support Network by phone or by the website here: https://rdi.ie/lightup4rd/


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