Mission Statement

Everybody’s experience of it is different. My CaverVoice is here to support, share, encourage and remove barriers for young people affected by cavernoma. 

We are here for anyone under the age of 25 who is living with or supports anyone with a cavernoma. It could be you affected, a sibling, a friend, someone you care for. No matter what we are here and want to make your journey less isolating and ultimately more fun.

What is My CaverVoice?

My CaverVoice means that no young person needs to be alone with a cavernoma.

We are run by young people to raise awareness and provide support and friendship for children and teenagers living with cavernomas.
It is a safe and energetic space to learn, share and connect together so young people find their CaverVoice, providing a platform that allows them to have a say in their treatment.

My CaverVoice is the future of CAUK and is improving life experiences for young people with rare diseases today.

Who are we?

We are four enthusiastic young people who like Disney, sailing, maths, Harry Potter, looking after children, meeting friends, making new friends, musicals and so much more!

Our diagnosis doesn’t define us, we learn, sail, play, teach, love, laugh, sing,and, again so much more

Who can use My CaverVoice

Any young person under the age of 25 affected by cavernoma. That could be you, your brother, sister, friend or any family member. We want every young person affected by cavernoma to feel welcome, supported and not alone. One big family!

Young carers are very welcome, we understand the worry and how hard it can be and are here for you. We have young carers who are helping their parents live daily with cavernoma and My CaverVoice is here to support you.