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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 3500 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.

About Us

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.  Nearly 20 years on and CAUK now has over 3,500 registered members and is a proud member of the European Cavernoma Alliance, as well as the Neurological Alliance, Genetic Alliance, Eurodis and NCOV all of whom represent are community interests.

Our vision is to find a cure for cavernoma by 2030 #CaverNoMore2030.  We are working hard to achieve this by promoting cavernoma research in the UK alongside the support and information we offer the cavernoma community.  

Our support services include a helpline, counselling, buddying, online support group and meet-ups (online and in-person).  Our educational information includes an Annual Forum, online webinars, in-person lectures, leaflets and online information.

We depend on funding from charitable grants and the amazing fundraising efforts of our members and supporters.

“I knew my body better than anyone else. I learned to keep asking questions and always get a 2nd opinion.” Jac’s Cavernoma Story

My name is Jac Sinnott and I’m 39 years old. My cavernoma was located near my thalamus. I was diagnosed in July 2021 after hospitalisation following a bleed. I presented myself to the hospital with persistent symptoms which a couple of different GP practices said were migraines. Initially, my local hospital didn’t know what was causing my symptoms and it took a long time to get answers, especially as we were still in lockdown due to the pandemic.
My most recent symptoms appeared in late June 2021 and they presented as pins and needles down my left side as well as weakness and numbness on that side. I also had visual disturbances. Each episode would last for 30 minutes to an hour. 

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Care Study site teams across the country have successfully recruited 57 participants for the first ever pilot #clinicaltrial for #cavernoma. There are now only 3 participants left to recruit before the end of April.

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CARE PREP: New cutting edge research trial for cavernoma

We are delighted to announce that a consortium, led by CAUK medical advisor Professor Rustam Al-Shahi Salman and comprising of a number of leading clinicians and patient advocacy organisation leaders – including David White of CAUK – has been awarded a grant to initiate the planning of an international ‘platform trial’ to test multiple potential cavernoma medications at a time.

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CARE Study: Newsflash

We are delighted to report that the team at Kings College Hospital London has recently recruited its first two participants for the trial, with one patient randomised for ‘active treatment’ and the other randomised for ‘conservative management’. In equally exciting news, the team at Royal Hallamshire Hospital in Sheffield have recruited their sixth participant!

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