According to a story from sciencex.com, Queen’s University Belfast, University College Dublin, and a team of 33 other partners have come together to start the All-Ireland Rare Disease Interdisciplinary Research Network (RAiN). While each rare disease individually may only impact a few thousand or hundred people, an estimated 400,000 people in Ireland are believed to be rare disease patients. This is roughly equivalent to the number of people on the island with diabetes.

One of the RAiN’s first goals is to study the quality of life of people living with rare diseases, both in Ireland and around the world. Many rare disorders are chronic and debilitating, and an estimated 30 percent of children diagnosed with a rare disorder are dead by age five.

Associate Professor Suja Somanadhan, co-lead of RAiN at UCD, elaborated on the mission of the organization:

“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.”

QUB co-lead Professor Amy Jayne McKnight also weighed in:

“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.”

RAiN will receive funding from the Department of the Taoiseach, more specifically from the Irish Research Council New Foundations awards. It will build upon an already established history of research partnerships between UCD and QUB. The organization aims to foster collaborative efforts between rare disease patients, their families, researchers, practitioners, and lawmakers.

The group plans to hold monthly gatherings in order to talk about research intended to address the unmet needs of the rare disease community. RAiN anticipates impacting policy by helping to develop Patient Report Outcome Measures (PROM), with a special focus towards children and youth with rare diseases. RAiN also intends for all of its activities to disseminate and engage with larger-scale global initiatives as well.