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Youth Voice

Listening to and understanding the lived experiences of children and young people with epilepsy is at the core of how we work at Young Epilepsy. We are pushing the boundaries to ensure young people's voices are heard and respected.

Would you like to get involved?

The right for every child to have their opinions heard and taken seriously is fundamental to our work with the Youth Voice Network and Young Trustees. We work with a growing community of over 100 children and young people with epilepsy, aged 13 - 25 from across the UK. Through sharing their stories, they help shape our policies and campaigns, products and services, to create positive change in wider society. Every young person with epilepsy has a unique story, we work to ensure their voice is heard. 

There are also two Young Trustees who sit on Young Epilepsy’s trust board, ensuring that young people influence the direction and management of our organisation.

Why do we need you?

Young people are at the centre of everything we do, and we are striving to ensure that every young person with epilepsy has the opportunity to be heard and their condition better understood.

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


  • Receive useful training
  • Attend exciting events
  • Boost your CV

We have a commitment to Article 12 of the UN Conventions of the Rights of a Child which states:

UN Logo

UN Convention Article 12

“Children have the right to give their opinions freely on issues that affect them. Adults should listen and take children seriously.”

Article 12 of the UN Convention on the Rights of the Child (UNCRC) establishes the right of children and young people to express their views and be involved in decisions that affect them, both as individuals and as a group.

Our Youth Voice Network is leading on this by contributing to our strategy and being involved at all levels of the charity. They ensure the overall direction of the services we provide, which supports the rights of children and young people with epilepsy.

Four young people, two women and two men, sit on a sofa smiling at the camera

Meet the Young Reps

Find out more

Would you like to get involved?

Would you like to learn more about how you can get involved with the Youth voice network?

Find out more

National Youth Agency and Hear by Right

Hear by Right is an organisational development tool that was established by the National Youth Agency with and for young people fostering a culture of embedding youth voice and inclusivity. This is a continual journey for keeping young people at the heart of decision making whilst increasing their voice, influence and place within each unique organisation and wider society.

Young Epilepsy are proud to have been awarded Hear by Right Flagship status, which recognises our ongoing commitment to listening and acting upon Youth Voice.

Frequently asked questions

Answers to some of the most commonly asked questions we receive.

Find here