Cavernoma Alliance UK

Who we are

About cavernoma

Cavernomas are clusters of abnormal blood vessels, often described as looking like raspberries, which can develop in the brain or spinal cord. Their thin walls can leak or bleed, sometimes without warning.

Around 1 in 625 people are thought to have a cavernoma, affecting approximately 108,000 people in the UK. Most people will never experience symptoms. However, around 1 in 2,700 people develop symptoms, making symptomatic cavernoma a rare condition. These can include haemorrhages, seizures and other neurological problems.

Treatment may involve monitoring, neurosurgery or stereotactic radiosurgery, depending on individual circumstances. There are currently no medications that treat cavernoma itself, although research into potential treatments is ongoing. In most cases, the cause is unknown. Around 1 in 5 people have a genetic form, which can be passed on to children.

About Cavernoma Alliance UK

Cavernoma Alliance UK was founded in 2005 by Dr Ian Stuart, after his own experience of a cavernoma bleed and the lack of information and support available. His aim was simple: to ensure that no one faces cavernoma alone.

Today, we are a small national charity supporting over 4,200 members, with a team of part time staff and more than 50 volunteers, most of whom have lived experience of cavernoma.

Each year, around 1,200 people turn to us for support through our helpline, counselling, buddying and community meet ups. Over 90% of people tell us this support has made a positive difference to their mental health, resilience and understanding of the condition.

We provide trusted, clinician reviewed information through our website, webinars and events, helping people to better understand their condition and make informed decisions about their care.

We also play an active role in research. We are working with leading UK researchers on projects including with the University of Edinburgh and the University College London, with the aim of developing better treatments and, ultimately, a cure.

Our culture and values

Our values are the core principles that guide everything we do at Cavernoma Alliance UK, shaping how we work together and support the cavernoma community.

Collaboration – Achieving more by working together and building strong relationships across our community, volunteers, clinicians and partners.

Information – Providing reliable, accurate and accessible information to support informed decision making.

Inclusion – Embracing and valuing every voice, lived experience and perspective.

Empowerment – Supporting people to feel informed, connected and better able to make decisions about their health and wellbeing.

Equality, diversity and inclusion policy

Cavernoma Alliance UK (CAUK) is committed to creating an inclusive, respectful and welcoming environment for staff, volunteers, trustees and the people we support.

We are an equal opportunities organisation and oppose discrimination in all forms. We recruit and support people based on their skills, experience, potential and lived experience, regardless of age, disability, race, religion or belief, sex, gender identity or sexual orientation.

As a charity supporting people affected by a rare neurological condition, we value diverse perspectives and actively encourage applications from people with lived experience, disabilities, long term health conditions and communities underrepresented within the charity sector. We are committed to making reasonable adjustments throughout recruitment and employment wherever needed.