Cavernoma Alliance UK (CAUK) is a national charity serving those with cavernoma, their carers/families,and the medical professionals who treat them. We provide information, support, and services for those affected by cavernoma, and raise awareness of this little-known condition among the public and wider medical community.
Cavernomas are clusters of abnormal, leaky blood vessels found primarily in the brain and spinal cord. There is a genetic form of cavernoma, and it is estimated that cavernoma is familial in 20-30% of cases. Symptoms vary, depend on location and size of the cavernoma, and are exacerbated if they bleed.
At least 1 in 600 people in the population has asymptomatic cavernoma, but for the 300 or more people a year in the UK diagnosed with symptomatic cavernoma, including babies and children, life may be seriously debilitating.
Cavernomas are still poorly understood. They are often misdiagnosed, and there is no good evidence-based treatment for many cases. CAUK works closely with our medical community to further research on cavernoma. In 2014-15, CAUK undertook with the medical profession a ‘Priority Setting Partnership’ aiming to identify the most important research questions that need to be addressed to improve the treatment and management of cavernoma.
Contact: Ian Stuart (firstname.lastname@example.org)
Phone: +44 (0)1305 213876
Address: Cavernoma Alliance UK, Suites 4 & 5, Somerleigh Gate, Somerleigh Road, Dorchester, Dorset, DT1 1TL