Join CAUK today


Support CAUK today

Contact Us

Phone or email

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 3800 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.