Photograph of two young woman laughing, one facing camera one facing her friend

Our strategy & performance

We are dedicated to standing with children and young people living with epilepsy.  

By 2030

All children and young people with epilepsy in the UK will be a part of a community that gives them the support they need, when they need it. Their voices will be heard and respected. Healthcare services will meet their physical and mental health needs. They’ll take part fully in all aspects of school life and be able to thrive. Every child and young person with epilepsy in the UK, and their care givers, will know we’re here to help.

Strategy 2025-2030 

Led by young people living with epilepsy, we designed three programmes to deliver our strategy:

Programme one: Me and my family gain confident through information and support

Programnme two: My health and wellbeing needs are met

Programme three: My education opportunities are inclusive

Read our strategy

Why we are here...

  • 100K

    children and young people have epilepsy in the UK

    On average, 23 new cases of epilepsy in children and young people are diagnosed every day.

  • 1 in 3

    children and young people with epilepsy have seizures they can't control with medication

    More research into epilepsy treatment is an urgent medical need.

  • 3 in 4

    children and young people say living with epilepsy greatly affects their mental health

    Anxiety, depression and isolation are all more common in young people with epilepsy.

  • 1 in 3

    children and young people with epilepsy don't get the support they need to take part fully in school

    This varies from being left out of activities or not having their education tailored to their condition.

Young people will lead the change 

Every child and young person with epilepsy has a unique story. At Young Epilepsy, they tell us what they’ve experienced, and we listen. We make sure their voices are heard and respected, and their opinions taken seriously. 

The Youth Voice Network is a growing community of young people with epilepsy from across the UK, aged 13–25. 

Members of the Youth Voice Network get involved with the charity at all levels. 

They help shape our policies, campaigns, products and services in support of the rights of children and young people with epilepsy. 

They’ve played a lead role in developing our strategy for change in wider society. 

As well as the work of the Youth Voice Network, two Young Trustees sit on Young Epilepsy’s Board of Trustees. They directly influence the organisation’s direction and how it’s managed. 

At Young Epilepsy, we’re proud that the National Youth Agency has awarded us Hear by Right Flagship status. The award recognises that we listen to what young people with epilepsy have to say – and act on it. 

But we aren’t finished. As part of this strategy for change, we’re introducing a youth advisory council, for children and young people ages 8–25. They’ll help lead this strategy along with staff and trustees.

Our three programmes

Our three programmes

Programme one

Me and my family gain confidence through information and support

Our three programmes

Programme two

My health and wellbeing needs are met

Our three programmes

Programme three

My education opportunities are inclusive

How we'll work

We'll expand and strengthen the Youth Voice Network to ensure it truly represents the diverse experiences of young people with epilepsy, and amplify their voices to influence change.

We know we are only one player in the epilepsy and broader healthcare and education ecosystems. As a result, we'll deliver impact at scale through our existing partnerships, while forging new partnerships in our strategic areas of focus. 

We'll convene and influence where possible so that we become the 'go-to' charity for those looking to incorporate the views and experience of children and young people living with epilepsy.

Our work is driven by evidence-based practice and the advancement of research. We will continue to conduct impactful studies that address the needs of children and young people, while strengthening collaboration with our research partners, including those led by the Prince of Wales Chair of Childhood Epilepsy.

We are committed to staying at the forefront of digital innovation, ensuring that our work is powered, enhanced and delivered by cutting edge digital solutions. By investing in digital expertise and embedding digital strategies, we aim to deliver accessible, effective and future-proof support for children and young people with epilepsy, as well as for our partners and stakeholders.

Young boy stands in front of his basketball team at school

No child should have to face epilepsy alone

You can help them get the support they need.

together, we create possible

Research and Impact Report 2024

The 2024 Research and Impact Report highlights the significant achievements and milestones of the National Centre for Young People with Epilepsy Charitable Trust. This year has been marked by substantial progress in paediatric epilepsy research, with numerous active projects, new studies, and impactful publications.

Annual Report and Accounts 2023-2024

Young Epilepsy's annual review looks at the range of work we have carried out over the course of the year. It explains how donations, contracts and fundraising activities have helped pay for our services.