We are Cavernoma Alliance UK

Founded in 2005, our aim is to provide support and information for all those affected by cavernoma including friends, family, carers and professionals.

With over 2800 members in the UK and worldwide, the charity aims to raise awareness of this relatively unknown condition throughout the general public as well as the medical community.

What is a cavernoma?

A cavernoma is made up of abnormal blood vessels and can be found in the brain and/or spinal cord and looks like a raspberry.

1 person in 600, in the UK, has a brain cavernoma without symptoms (asymptomatic). This equates to roughly 90,000 people – enough to fill Wembley Stadium. A spinal cavernoma is rarer than a brain cavernoma.

In this video, hear clinicians and members talking about their experiences of cavernoma. 

Our services

Telephone Support

Our telephone support line is open 10am - 4pm, Monday to Friday

Email Support

You can reach us via email at any time, and we aim to respond as quickly as possible

Events & Annual Forum

We organise multiple events around the country

CaverBuddies

On going peer support when you need it most

Professional Lectures

Presentation and research events around the country

Meet Ups

Join us, and members from your local area for a coffee & chat

Therapy

Therapy for adults, children and carers to work though concerns

Webinars

Online meetings, presentations & chats providing information & advice

Carers Support

Support, chat and advice for carers of those with cavernoma

What our members say...

CAUK and all its members have made me feel ‘normal’. I am among people who know exactly how I feel. It’s as simple as that. I am not a person with a rare condition here, I am part of a group of people with the same condition. In real life I might never meet someone with a cavernoma,but here everyone has one/many. So I’m not an oddity here.
Lorna, Scotland
Member since 2014
CAUK is incredible. It provides invaluable support online, an informative website with vital information, access to professional opinions and face to face meetings at events, amazing lectures and the opportunity to meet others who have experienced cavernoma.
A world without CAUK doesn’t bear thinking about!
Abi, Surry
Member since 2012

Get in touch with us

available from 10:00 – 16:00

Lindsay’s Story: Cavernomas in the Brain and Spine, & CCM1

In 2011 I had a bleed from a Spinal Cavernoma. At the time I had never heard of this rare disease. I had never had any health problems. My symptoms started with a tingly feeling down my left leg. I also went for a bath and my left leg didn’t feel the temperature. I was diagnosed with 1 Cavernoma in my spinal cord and 3 small Cavernoma’s in my brain.

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Lauren’s Story

Lauren was diagnosed with cavernoma in her lower right cebellum after suffering multiple debilitating migraines. She was forced to have brain surgery which was successful. Lauren suffered a lot emotionally but was able to go back to her degree and, just last year, she took a leap set up her very own Performing Arts studio. An inspiration!

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Vera’s Story

Almost her entire life Vera had been experiencing focal epileptic seizures many times a month and was completely unaware of what it was. Now, one year later, she waiting for a date for major brain surgery.

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Pat’s Story

Pat tells the story of her journey with cavernoma, from initial diagnosis of epilepsy, the discovery of her multiple cavernomas and her eventual surgical resection. She talks about what has helped her cope through the years and emphasizes the importance of support and patience.

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