Young people in a group meeting

Be a member of the Youth Voice Network

A community of people who get it

The Youth Voice Network is a community of young people with epilepsy, for young people with epilepsy.

You have told us how important it is to meet and connect with other young people who get it. Other young people with epilepsy who you can share your experiences with, and they can share theirs. It is important to you to be with other young people who know what it is like to live with epilepsy. 

The Youth Voice Network is a group of over 100 young people with epilepsy who help to ensure that young people are at the centre of everything we do at Young Epilepsy. The Youth Voice Network helps shape the direction of the charity and ensure that we understand the experiences of young people and work to support them as well as campaigning for wider change.  

Different ways you can get involved

How much you get involved is up to you! It is flexible - in person or online - and depending on how much time you can give. You can:

  • Join the community and build connections with other young people
  • Be a part of the movement, and have your voice heard and help bring about social change
  • Work on cocreation projects developing information, content, and campaigns
  • Share your story to help other young people get the support they need

Plus:

  • Receive useful training
  • Attend exciting events
  • Boost your CV
Being able to share my story, knowing that my experience could support others, gave me a sense of control over my epilepsy, at a time it felt out of my control.
Charlotte

Youth Voice Network Opportunities

  • Attend regular online meetings.
  • Contribute to our online community platform.
  • Share experiences and opinions to help make decisions and create positive change.
  • Get involved in content creation, campaigns, and fundraising.

Recent Young Voice Network Projects

  • Influencing healthcare and education settings.
  • Creating youth focused content.
  • Supporting Young Epilepsy campaigns.
  • Fundraising.
'I wanted to be a part of this campaign because I want people to be aware of the struggles. I want them to get the help, so that they can succeed in their educational journey. I don't want anyone to go through what I went through.'
Zunera - Youth Voice Network member and features in the #UnderstandMyEpilepsy campaign

You can be a part of the change

Your voice can make people sit up and listen. No one knows better than you how epilepsy can be frightening, isolating, and misunderstood.  Young Epilepsy is led by the voices of young people with epilepsy, young people like you.

We are campaigning for young people with epilepsy to:
Get the support they need in school to be safe and included
Get the mental health support they need as part of their epilepsy care

You have told us how you are often unnecessarily excluded from activities or opportunities at school, and you do not get the support you need for full participation in school life.

We are campaigning for every child with epilepsy to have an Individual Healthcare Plan (IHP) for school, setting out information about their condition and the support they need to be safe and included at school.

You can be a part of this campaign, sharing your story, influence government and cocreating information to help young people influence their day-to-day life.

You have told us how living with epilepsy has affected your mental wellbeing impacting your thoughts, feelings and how you are able to cope with everyday life.

We are campaigning for UK healthcare leaders to make sure all children with epilepsy have access to mental health checks and support as part of their epilepsy care.

As part of our campaign members of the Youth Voice Network have played a key role in The NHS England CYP Epilepsy Transformation Programme to share their experiences of the impact of epilepsy on mental health. Network members shared their views and made suggestions on how to improve services and mental health support.

Your story matters - sharing experiences, making recommendations to health care providers.

With support from Young Epilepsy, you can help shape your local epilepsy services in hospitals across the UK.

The Youth Voice Network can develop new ideas for how to get involved, some of the most popular are:

  • Being a blogger, reporter, podcaster
  • Sharing your story
  • Developing our TikTok channel

How do I sign up?

Fill in the form below and a member of the team will be in touch.

Once you are a member you will receive the Youth Voice Network handbook, with everything you need to know. You will have access to the Youth Voice Network platform where you can safely meet other young people and have conversations about epilepsy and all the different areas of life that might be affected by your condition.

You will receive the monthly Youth Voice Network Enewsletter, packed full of the latest news, events, and opportunities for you to get involved.