Rare Disease Research Education and Innovation in Action (RAiN Fest 2026) conference in Dublin
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Rare Disease Research Education and Innovation in Action (RAIN Fest 2026) conference in Dublin
The Rare Disease Research Education and Innovation in Action Conference (RAiN Fest 2026), was held at the University College Dublin (UCD) O’Brien Centre for Science on Saturday 28 March 2026.
Organised under the All-Ireland Rare Disease Interdisciplinary Research Network (RAiN), a cross-border initiative co-led by University College Dublin and Queen’s University Belfast (QUB), the event brought together researchers, clinicians, students, policymakers, patient organisations, and advocates to share knowledge, foster collaboration, and strengthen research and innovation in rare disease care across the island of Ireland.
This year’s theme was “Voices Rarely Heard: Empowering Young People Living with Rare Diseases — From Lived Experience to Leadership” and featured keynote speakers including Susanne (Susa) Benseler and Catherine Quinlan, Children’s Health Ireland (CHI), as well as interactive workshops, a young people’s forum, caregiver sessions, a “Thesis in 3 Minutes” track, and an interactive panel on the future of rare disease research and education. Also Professor Amy Jayne McKnight from QUB (who Katie's supervisor) who chaired the final session of the day.
Katie Quinn, a Ph.D student from QUB with whom we work closely in Northern Ireland, attended on behalf of the Society as she is currently undertaking research into the health impacts of caring for a rare condition such as Fragile X Syndrome (as well as 22Q Deletion Syndrome, Rett Syndrome, and Angelman Syndrome). Many thanks Katie.