SUDEP Action

Making every epilepsy death count
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NIHR Research - Involvement opportunity for people with epilepsy


People with Epilepsy Expert Group

We need you!

Do you have epilepsy and want to help shape and champion an exciting new project into epilepsy risk communication?

We are looking for 5 people with epilepsy (18 years+) to join the project to be our expert group of people with day to day experience of living with the condition. You will:

  • Help shape the project and project outcomes

  • Attend regular project meetings to feed into the project & support the project research team

  • Act as a champion and spokesperson for the project

To begin with project meetings will be virtual but may become face to face in future. 

What is the project about?

This project, funded by NIHR (the UK's largest health research funder), is supported by SUDEP Action and some of the leading UK epilepsy experts. It will help us better understand how to best communicate about epilepsy risks (between clinicians and people with epilepsy), so actions can be taken to hopefully reduce risks.

More details about the project can be found here:


Who are we looking for?

People living with epilepsy based in the UK who are over 18 years old.

You need to have had recent experience of attending an epilepsy appointment &/or discussing epilepsy risks with your epilepsy clinician.

People who understand why this project and discussing epilepsy risks is important.


How to apply:

If you are interested in joining us on this exciting project, please email us ([email protected]) with the below details by Wednesday 27th January. 

Please provide your name and contact details along with a short note about why you'd like to be involved in the project. 
Succesful applicants will be invited to join the group, with the first meeting taking place soon after the group is formed.