A new cross-border research network, which aims to improve the lives of people affected by rare diseases throughout the island of Ireland, has been launched.

The All-Ireland Rare Disease Interdisciplinary Research Network (RAiN) has been launched by University College Dublin (UCD), Queen’s University Belfast and 33 partners.

According RAiN’s co-lead for UCD, associate professor Suja Somanadhan, this 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”.

While individual diseases may be rare, collectively, rare diseases impact more than 400,000 people across the island of Ireland, yet these diseases generally receive less recognition and support. 

Many people living with a rare disease experience chronic debilitating illness and over 30% of children with rare diseases die before the age of five.

RAiN will help to evaluate the quality of life and management of people living with rare diseases in Ireland and internationally.

Officially launching the research network, vice president for equality, diversity, and inclusion at UCD, Prof Colin Scott, pointed out that people living with rare disorders “face significant health and social inequalities”.

“This all-island research network helps ‘level up’ the rare disease community across Ireland. I am delighted to launch this unprecedented collaborative approach led by UCD and Queen’s University with government, local authority, charity, patient and caregiver partners across Ireland,” he said.

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

It is hoped that by fostering collaboration among researchers, practitioners, policymakers, patients and families, RAiN will advance health service developments, leverage funding and facilitate internationally excellent translational rare disease research. 

RAiN will be patient-centred and it will 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.

It will also feed into a global rare disease research project, enhancing the profile of Irish 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. These events will bring together researchers, practitioners, policymakers, patients and families across the Island of Ireland.

“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,” commented Queen’s University RAiN co-lead, Prof Amy Jayne McKnight.