300,000 people in Ire;and suffer from these rare conditions.
Urgent action is needed to tackle issues in the health service badly affecting people living with rare diseases.
Calls are being made for the creation of six new Genomic Resource Associate staffing roles at the Department of Clinical Genetics at CHI at Crumlin.
Rare Diseases Ireland's 'Get Rare Aware' campaign aims to highlight the everyday difficulties faced by people living with a rare diease or condition.
It is estimated that 300,000 people across the country have a rare disease, with over 62,800 of in Laois, Offaly, Westmeath and Longford.
The RDI, which was co-founded by Athlone woman Laura Egan, brought their concerns before the Oireachtas in government buildings recentlyD.
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