The RAiN International Symposium is focused on Equity for People Living with a Rare Disease. The event was chaired by Dr Helen McAneney, RAiN Network Manager, and opened by Prof Orla Feely, President of University College Dublin.

The day was split into two sessions: the morning session focused on Equity for People Living with a Rare Disease and featured a plenary session from Dr Lina Jankauskaite, Head of Coordinating Centre for Rare and Undiagnosed Diseases, Lithuanian University of Health Sciences Kauno Klinikos, Lithuania. This was followed by a panel discussion on the topic with guests included Cathy McGrath from Disability Federation of Ireland; Dermot Devlin, a Disabled Rights Activist from Northern Ireland; Anne Lawlor, the Chairperson of the 22q11 Ireland Support Group; and Assoc Prof Cormac McCarthy, Co-Lead of the Rare Disease Clinical Trial Network. Breakout presentation sessions followed this, on the topics of research and policy and Early Career Researcher Forum.

The afternoon session focused on Innovations and Rare Diseases, and featured a plenary session by Dr Marshall Summar, Director, Rare Disease Institute Laboratory, Children’s National, Washington DC, USA. The panel discussion following this included guests such as Prof Lizbeth Goodman from the Screen 4 Rare Project; Dominykas Milašius from Delta Biosciences; Alan Finglas, patient advocate; Rosaline Callaghan, Northern Ireland Rare Disease Partnership and Founder of Amyloidosis Ireland; and Dr Avril Keenan, CEO of Health Research Charities Ireland (HRCI).

It was a fantastic day of knowledge sharing, networking and dissemination of research amongst stakeholders across the rare disease community. Many thanks to all who attended!