The Health Research Board (HRB) has welcomed the launch of the National Rare Disease Strategy 2025-2030 by the Minister for Health, Jennifer Carroll MacNeill today.

The strategy aims to improve the lives of people in Ireland living with a rare disease and their circle of support, creating a more inclusive healthcare system that addresses the unique challenges posed by rare conditions.

The HRB had a central role in developing the strategy through its involvement in the National Rare Disease Steering Group.

The strategy provides a comprehensive framework to improve diagnosis, treatment and support for people living with a rare disease, promoting equitable access to healthcare and fostering innovation in rare diseases research and treatment.

Rare diseases research forms a key part of the strategy and is crucial for advancing the understanding and treatment of conditions that often go unnoticed due to their low prevalence.

Commenting on the launch of the new strategy CEO of the HRB Dr Mairéad O’Driscoll said:

“At any time, approximately 300,000 people in Ireland, many of whom are children, are living with a rare disease. The HRB is proud to have played a significant and meaningful role in supporting rare disease research having invested €18.8 million in collaborative research initiatives at a national and international level to date.”

The strategy aims to advance research into rare conditions for the betterment of care and the development of evidence-based treatments, building a future where rare diseases research underpins policy and practice.

Oonagh Ward, HRB Head of Research and Innovation Infrastructures and member of the Rare Diseases Strategy Steering Group also welcomed the strategy:

“The establishment of a National Rare Diseases Research Group including people living with rare disease, will enable a more holistic, co-ordinated and strategic approach to ensuring a spectrum of high-quality rare diseases research in Ireland.”

“We look forward to this next chapter of fostering even greater research collaboration and co-ordination and accelerating scientific progress by maximising the impact of shared data, expertise and resources”.

The National Rare Disease Strategy 2025-2030 is available here.

For further information on HRB’s investments in rare disease to date see our blog: https://www.hrb.ie/blog/hrb-marking-international-rare-disease-day/