€1.5M allocated for development of rare disease services

Minister for Health Stephen Donnelly has shared the details of the €1.5M that has been allocated to the development of rare disease services.

This funding comes under part of Budget 2025.

The Department of Health confirmed, “Rare diseases are defined as having a prevalence of fewer than five cases for every 10,000 persons. Collectively these diseases affect around 6% or one in 17 of the population in Ireland”.

People that have been diagnosed with a rare disease not only require complex care and highly specialised care from health care professionals in Ireland, but may also benefit from international expertise.

After this funding was announced under Budget 2025, there will be more resources provided to improve care coordination and strengthen collaboration with international expertise through the European Reference Networks.

A further €300,000 has also been provided to support the evidence reviews that inform the expansion of the Newborn Screening Programme. 

There will be significant funding to support the continued development of the Genetics and Genomics Clinical Service too, in order to reduce wait time and improve access to clinical genetic services.

Minister Donnelly explained, “This funding will strengthen resources in our National Rare Disease Office, equipping it for the implementation of the new National Rare Disease Plan as outlined in the Programme for Government”.

“I’m very conscious that a rare disease diagnosis can be a very lonely and isolating experience for patients and for their families. When we consider that collectively 300,000 of our population are dealing with a rare disease, it means that collectively, these diseases are far from rare".

"Collaboration and shared expertise are critical for improved patient services and care, so I’m delighted to provide funding that will support increased partnership through our European Reference Networks”.