Ireland cross border network launches to bring hope to families affected by rare diseases

Today, University College Dublin (UCD), Queen's University Belfast, and 33 partners launched the All-Ireland Rare Disease Interdisciplinary Research Network (RAiN).

Individual rare diseases may be rare, but collectively impact more than 400,000 people across the island of Ireland. There are as many people living with rare diseases across Ireland as live with diabetes, yet rare diseases receive much less recognition and support.

Many people living with a rare disease experience chronic debilitating illness, with more than 30 percent of children with rare diseases dying before their fifth birthday. RAiN will help evaluate the quality of life and management of people living with rare diseases on the island of Ireland and internationally.

Commenting on the occasion of the launch, Taoiseach Leo Varadkar, TD said, "I am pleased to announce the launch of the All-Ireland Rare Diseases Interdisciplinary Research Network, which will strengthen cross border links between academic, clinical health, and social care researchers working to improve the lives of people affected by rare disorders. 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."

Co-lead of RAiN for UCD, Associate Professor Suja Somanadhan said, "This all-Island interdisciplinary rare disease research network will serve as a hub to support collaboration and connection between members across the Island, which includes researchers, early career investigators, industrial partners and Public and Patient Involvement expert groups."

Co-lead of RAiN for QUB, Professor Amy Jayne McKnight said, "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."

Officially launching the network, Vice President for Equality, Diversity, and Inclusion at UCD Professor Colin Scott said, "People living with rare disorders face significant health and social inequalities. The All-Island interdisciplinary rare disease research network helps 'level up' the rare disease community across Ireland. I am delighted to launch this unprecedented collaborative approach led by UCD and QUB with government, local authority, charity, patient and caregiver partners across Ireland."

RAiN is funded by the Department of the Taoiseach from the Shared Island strand of Irish Research Council's 'New Foundations' awards. The network builds on established north-south research partnerships between UCD and Queen's*.

By fostering collaboration among researchers, practitioners, policymakers, patients and families working on rare diseases, RAiN will advance health service developments, leverage funding, and facilitate internationally excellent translational rare disease research.

Monthly seminars will discuss research that addresses the significant unmet health, social, psychological, and educational needs of children, young people affected by rare disease and their families. Nurtured research partnerships will inspire and empower early career researchers as emerging leaders for interdisciplinary rare disease research.

The RAiN project will be patient-centred and directly impact policy through the development of Patient Report Outcome Measures (PROM), with a focus on children with rare diseases and their specific care needs across the island of Ireland. RAiN will also feed into a global rare disease research project, enhancing the profile of our all-island rare disease research.

Outputs from this research network will be disseminated through open-access publications, regular presentations, and on the RAiN website in easily accessible formats, as well as via interdisciplinary networking events, bringing together researchers, practitioners, policymakers, patients and families across the Island of Ireland.

*Existing partnerships include RAINDROP, led by Associate Prof Suja Somanadhan, UCD School of Nursing, Midwifery and Health Systems, and RARDTAC, led by Professor Amy Jayne McKnight at the School of Medicine, Dentistry and Biomedical Sciences, Queen's University Belfast.

Provided by University College Dublin