Here are some of the recent activites of the network…

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.

Conditions Insight Report for Rare and Complex Epilepsies

We are acutely aware from families of those impacted by rare and complex epilepsies that achieving a successful Personal Independence Payment (PIP) award is usually incredibly challenging and often unsuccessful at first attempt, with many families going through mandatory reconsideration and even tribunal to achieve their PIP award. As a network we have been working together to create a new Conditions Insight Report (CIR) for the DWP assessors so they can better understand the impact, symptoms, comorbidities and care/mobility challenges of those living with the epilepsies. We hope that by educating the DWP assessors that once in force (we are awaiting final approval/implementation) this new CIR will improve first time success rates for families and relieve one less burden on their lives. 

UK Rare Epilepsies Conference

We had a shared stand at the BPNA conference and plan on repeating this collaborative approach at future relevant conferences. Individually we are too small to be seen or heard at these conferences but together we have more of an impact.

Write up coming soon…

Rare Disease Patient Registries

Exploring the potential of a collaborative rare epilepsies registry.

Write up coming soon…

Other sharing opportunities:

  • The way forward for CBMPs and general access to anti seizure medications
  • Genomics research for epilepsy diagnosis
  • Collective input to NICE guidelines for epilepsy