News

In 2023 Cavernoma Alliance UK was approached by a filmmaker who has cavernoma, Lucy Gohm.  After her own experience with the condition, Lucy come to us in the hope that we could help her use her skills to amplify the voices of the cavernoma community by interviewing people with cavernoma and sharing their stories.  The result: two beautiful short films, featuring Emily and Sacha, and their stories of temporal-lobe and brainstem cavernoma respectively. 

This year we’re really excited to be bringing you speakers from the UK and US who are global experts on cavernoma.  Whether you are newly diagnosed or have been living with cavernoma for some time, we hope you’ll find these talks interesting and helpful.

Today, March 15th, we come together with organisations across the country to recognise young carers.
Every day, thousands of young people across the UK help look after someone in their family who is ill, disabled or has a mental health problem or an addiction.

On Saturday 3rd of June we’re taking a team up Snowdon, the highest mountain in Wales, carrying our CAUK flag all the way to the summit!  It’s our hope whilst trekking to both raise awareness about cavernoma and raise funds for CAUK’s services.  

Every year on the 28th of February, hundreds of organisations around the world come together to raise awareness for rare diseases, and improve access to treatment and medical representation for individuals with rare diseases and their families.  It is an opportunity to advocate for the 300 million people worldwide living with one of the 6000+ identified rare diseases, and a chance to shine a light on what it is like to live with a condition that most people have never heard of. 

Raising awareness of cavernoma in the general public and among medical professionals is a priority at CAUK. That’s why, last week, our founder, Ian Stuart,

Our new address is; Cavernoma Alliance UK, PO Box 366, Watlington, Oxfordshire, OX10 1GF

Did you know that there are lots of ways you can donate to and fundraise for CAUK for free? 

With the cost of living crisis affecting many households across the country, you might be wondering how you can support those affected by cavernoma without spending any money…