Epilepsy Action is dedicated to creating a world without limits for people with epilepsy.
We put people affected by epilepsy at the heart of everything we do, and we value their input in all of our activities. This is why our Lived Experience volunteers are so important - these are our true epilepsy experts. They know what it is like to deal with epilepsy every day, what problems it can create and what opportunities it can present. We want to hear the voices of everyone affected by epilepsy, so we can make sure that we focus on work that will have the biggest impact for them.
If you have epilepsy yourself, or are a carer or close family member to someone with epilepsy, we would like to have your input into our work.
We need your help to set priorities, to give feedback on our work and the work we do alongside researchers and the NHS. We would also love your input into our Excellence Collective. This brings together people affected by epilepsy, health and social care professionals, researchers and policymakers to highlight the problems faced by the epilepsy community, and to work together to overcome those problems.
In this role you may be answering surveys, joining focus groups, giving feedback on documents, or being a member of a steering group or advisory panel.
Our Lived Experience volunteers carry out their roles around their daily lives. This role is very flexible and can be done whenever you are free. You can do as much or as little as you like, and can choose to help on the projects that interest you the most.
- Represent the voices of people with epilepsy in Epilepsy Action’s work and in projects that we support within research and the NHS
- Share your story and use it to improve the lives of everyone affected by epilepsy
- Meet other people affected by epilepsy
- Learn about our work
- Helping to set priorities for Epilepsy Action’s Excellence Collective
- Giving feedback and helping to shape and steer our projects
- Giving feedback on research and healthcare quality improvement projects that we support
- Reading documents and giving feedback
- Joining focus groups to give feedback on projects
- Confident giving feedback on documents or in meetings
- Able to describe how epilepsy has impacted your life
- Able to use a laptop or smartphone to answer messages, read documents and join online meetings
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