New cross-border network aims to boost Ireland’s rare disease research

13 Feb 2023

Image: © DC Studio/

With 35 organisations across the island of Ireland, the RAIN project aims to improve the care, treatment and management for patients with rare diseases.

A new research network has been launched to improve rare disease healthcare across the island of Ireland, with a focus on patient care and collaborative research.

The Rare Disease Interdisciplinary Research Network (RAIN) has been created to evaluate the quality of life people living with rare diseases, both in Ireland and internationally.

The network aims to be patient-centred, with a focus on children with rare diseases and their specific care needs.

The RAIN network also plans to support global rare disease research, by releasing its findings through open-access publications while enhancing the profile of Ireland’s rare disease research.

The network involves University College Dublin, Queen’s University Belfast (QUB) and 33 partner organisations across the Republic and Northern Ireland. RAIN is also being funded by the Department of the Taoiseach, through the Shared Island strand of the Irish Research Council’s ‘New Foundations’ awards.

Speaking on the launch, Taoiseach Leo Varadkar, TD, said the new network will strengthen cross-border links “between academic, clinical health, and social care researchers”.

“Through the RAIN network, researchers will work in partnership with patients and families to make real impacts in the day-to-day care, treatment and management for those living with conditions such as cystic fibrosis, PKU, chromosomal anomalies, and childhood cancers, and enhance cooperation in how we respond to these challenges on an all-island basis,” Varadkar said.

The network plans to launch various initiatives to help improve rare disease healthcare across the island of Ireland.

For example, monthly seminars will discuss research that addresses the unmet needs for children and young people affected by rare diseases.

The RAIN network is also planning research partnerships to empower early career researchers, to help them become emerging leaders for interdisciplinary rare disease research.

Through pushing collaboration between researchers, policymakers and patients, it is hoped that the network will advance health service developments and lead to improved research into rare diseases.

“I’m delighted that so many individuals in our local rare disease community have come together to establish this network and look forward to working in partnership with those working, often on a shoestring budget, to improve the lives of people living with rare diseases,” said RAIN co-lead for QUB, Prof Amy Jayne McKnight.

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Leigh Mc Gowran is a journalist with Silicon Republic