Cavernoma Alliance UK

Who we are

Cavernoma are an abnormality in the blood capillaries of the brain and/or spinal cord that can cause serious, life changing and severely debilitating symptoms including strokes, seizures, partial/full paralysis, sight, speech and/or hearing problems. 

Our excellent website gives a comprehensive description of cavernoma and of our work.

OUR VISION: To help find a cure for Cavernoma by 2030

OUR MISSION: To promote and protect the physical and mental health of all those affected by cavernoma including patients, their relatives and carers through the provision of support, education, research and practical advice.

OUR VALUES: Trustworthy, Informative, Inclusive, Empowering.

CAUK provides comprehensive information and holistic support to those with cavernoma, their families and carers.  We aim to reach everyone diagnosed in the UK with a cavernoma and be there to support those who need us. Over one third of those diagnosed in the UK join us each year. 

Those who use our services, range from the parents of babies/young children to adults of all ages with cavernoma together with their carers and relatives.  We have strong links with medical professionals throughout the UK with an interest in cavernoma.

Our work is divided into five programmes:

CARE

1. Direct support for adults (68% membership base are adults with cavernoma).

2. Direct support for children and young adults with cavernoma and their families (4.2% of our membership are parents of children with cavernoma).

RESPONSE

3. Raising awareness of this rare condition with medical and social care professionals.

CURE

4. Aiding both UK and international research to improve the care and treatment of cavernoma and find a cure

UNDERPINNING OPERATIONS

5. People: internal (our staff), external (our members, our volunteers and the public)

We currently have four staff, our Chief Executive, Coordinators for online engagement and Volunteer Support and an Administrator.  This Support Worker is a revised, vacant post.