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About us
Who we are
Cavernoma Alliance UK (also known as CAUK) is a charity created for people affected by cavernoma – otherwise known as cerebral cavernous malformation (CCM); cavernous haemangioma; or cavernous angioma. Our mission is to improve the quality of life for all those affected and create greater awareness of the condition.
1 in 625 people have a cavernoma; a cluster of abnormal blood vessels in the brain or spine that look like a raspberry. Whilst most people don’t experience symptoms, those who do can have haemorrhages, seizures, headaches, neurological problems and a range of other life impacting symptoms. Cavernoma Alliance UK (CAUK) is a member led organisation, run by and for those impacted by cavernoma. We work from a model of empowerment, recognising the value of our members’ lived experience to: provide mutual support; improve standards of care; and drive research into finding a cure. We are there for people at every point in their lives, providing holistic person-centred support. All that we do is underpinned by our values of being: Empowering, Inclusive, Informative, Trustworthy, Confidential and Approachable.
