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.
CAUK was founded in 2005 by Dr Ian Stuart. Ian had a bleed from a brainstem cavernoma twenty years earlier and became increasingly frustrated by the lack of knowledge amongst the medical community of the condition as well as how little support and information was available.
CAUK now has over 2800 members in the UK and worldwide. We aim to provide free support and information for all those affected by cavernoma including friends, family and carers.
The charity also aims to raise awareness of this relatively unknown condition throughout the general public as well as the medical community.
CAUK does this by organising various events such as our Annual International Forum in London, running social media support groups, signposting people for information and publishing a monthly E-newsletter.
We depend on funding from grants, foundations and the amazing fundraising efforts of our members and supporters.
In the light of developments concerning the safety of the AstraZeneca vaccine we asked our scientific advisor, Professor Rustam Al-Shahi Salman, for advice for people with cavernoma.
With the easter bank holiday ahead of us, please find below a simple set of Riddles to make your Easter Egg hunts much more fun
We are delighted to be sharing the results from our recent member survey. We are continually working to improve the information and resources we provide so we are extremely grateful and pleased with the feedback we have received. This year has been challenging for everyone and we are so happy that we were able to offer much needed support for our members during this difficult time.
We have some news…. The CAUK team is expanding!!!
Rare Disease Day was established in 2008 by the European Organisation for Rare Diseases (EURODIS). Rare Disease Day began on 29th February 2008 and selected because it was a “rare day”. CAUK Founder, Ian Stuart comments on why its important to our community.
We all know this year we cannot celebrate Valentines as we do normally with meals out in restaurants and other special trips so we thought we would bring a Covid-19 friendly weekend to you as part of our £8000 for 80yrs campaign
Looking back to this time last year, we were all at the beginning of our lockdown journeys. Suddenly, things we took for granted could no longer happen and we had to adapt to new ways of being. Our latest therapy blog post by Fiona Holiday.
What we think, how we feel and how we relate to other are driven by the way our brains, bodies and minds work together. During this session, CAUK therapist Fiona will explor ehow our brains and bodies search for safety and respond to danger. We’ll talk about emotions and stress and what happens when we feel overwhelmed by danger and experience trauma.
Doctor Ian Kamaly discusses what options there are for screening of both patients with known cavernous malformations and family members who may possibly be affected. He then went on to give a very useful discussion on participation in sport and other activities for patients with known cavernous malformations.
The second in our series of emotional wellbeing blogs by our therapists.
Rare Disease Day was established in 2008 by the European Organisation for Rare Diseases (EURODIS). Rare Disease Day began on 29th February 2008 and selected because it was a “rare day”. CAUK Founder, Ian Stuart comments on why its important to our community.
Kai Alyssa Bossom discusses having a hemorrhagic stroke at age 25, and how she felt and the on going recovery process.
The Cavernomas A Randomised Effectiveness (CARE) pilot trial CAUK is the Patient Group in a consortium also including senior clinicians with a special interest in
The influence of the microbiome (the bacteria in your gut) on cavernoma development N.b. In the US, cavernoma are called cavernous angioma Introductory text for
Unit 601 (CAUK)
20, The Grove Industrial Estate,
Dorchester
Dorset
DT1 1ST
Registered Charity 1114145
Scottish Charity SC048458
Join CAUK today to gain access to our support services and free events.