UKRET representation at the launch of the Epilepsy Research Institute UK

On the 16th of May 2023 Epilepsy Research UK along with their founding partners; Young Epilepsy, Epilepsy Action, Epilepsy Scotland and International League Against Epilepsy British Branch, launched the new Epilepsy Research Institute UK. ‘The Institute will serve as a central hub for the epilepsy research ecosystem, promoting collaboration between academia, the NHS, industry, funders and patient organisations. Its joint aim is to expedite innovations for the 630,000 people in the UK with epilepsy through increased strategic research investment, capacity building, and research translation.’ The new institute was backed by the MP George Freeman, Minister of State for Science, Research and Innovation. The event was titled ‘How can we radically advance research into epilepsy’. There was representation from five Young Epilepsy representatives introducing speakers and sharing their perspectives particularly on their mental health experience. Talks from other prominent speakers included Professor Tony Marson discussing the epilepsy patient setting priorities and how these priorities are and will be tackled. Representing UKRET was Stephanie Prince providing the parent persepective talk. She discussed her experience as a parent of a child with a rare epilepsy, the research challenges particularly when your child has a rare disease and her experience as a board member of the charity Coalition to Cure CHD2. Through personal stories she encouraged researchers to find better treatments, that treatment priorities may not be control of seizures alone but to treat other associated co-morbidities, and undertake more natural history work to help inform patients and family and inform future clinical trials. This was an exciting event to be a part of and we look forward to the radical changes in epilepsy research the new Institute can provide.