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...
A world without CAUK doesn’t bear thinking about!
Get in touch with us
NEW INFORMATION LEAFLETS: Join our #ShareAndMakeAware Campaign
The team at CAUK, along with our medical advisors, have been working behind the scenes to create brand new Public Information Leaflet (PIL), with the aim of educating patients, clinicians and the general public about cavernoma.
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.
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!
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.
Debbie’s Story: My Family & Cavernoma
Debbie shares her open and honest account of her family’s journey with cavernoma – focusing in particular on her teenage daughter Libby who was diagnosed with cavernoma and had brain surgery aged 13.
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.
Cavernomas A Randomised Effectiveness (CARE) Study Update
We’re pleased to announce that the CARE Study is almost ready to open to recruitment! We will be opening our first recruitment centre in July.
How Cavernoma Grow : The role of a gene mutation linked to some Cancers with David White (Science of Cavernoma)
Join our science advisor David White in a new part of his Science of Cavernoma Series, as he discusses how Cavernoma Grow : The role
Research Update – Why Cavernomas cause seizures or strokes
Researchers have discovered an explanation for why cavernoma – clusters of dilated blood vessels in the brain – can suddenly grow to cause seizures or stroke.