Cavernoma Awareness Day 2025

What is Cavernoma Awareness Day?

Cavernoma Awareness Day aims to raise awareness of cavernoma, a neurological condition causing haemorrhages, seizures and other neurological problems.

Cavernoma affects 1 in 625 people. Despite this most people haven’t heard of it. Poor knowledge and understanding causes unnecessary suffering, as people commonly have their cavernoma missed or misdiagnosed with it taking one-year on average to get a diagnosis.

Cavernoma Awareness Day seeks to do something about this and is marked globally by patient advocacy organisations on the 14th of June in the middle of Cavernoma Awareness Month. Awareness raising events include lighting up national monuments, press interviews and much more.

What is a cavernoma?

Cavernoma, also known as cerebral cavernous malformations (CCM), look like raspberries and are found in the brain and spinal cord. They’re formed of abnormal blood vessels with thin leaky walls, which can bleed at any age without warning. 1 in 625 people are thought to have a cavernoma, and whilst most people won’t experience symptoms 1 in 2,700 do. Symptoms can include haemorrhages, seizures and other neurological problems. Treatment involves ‘wait and see’, neurosurgery or stereotactic radiosurgery; with no medications currently available.

How to get involved in Cavernoma Awareness Day 2025

Who are Cavernoma Alliance UK?

Cavernoma Alliance UK was founded in 2005 by Dr Ian Stuart after his life changed over-night following a devastating cavernoma bleed. Lacking information and support networks, he resolved to make sure that no-one else faced cavernoma alone. What started as a helpline run from Ian’s bedroom quickly became a national charity, which now has over 4,000 members. Cavernoma Alliance UK’s mission is to find a cure for cavernoma and it works to do this by promoting research and providing educational information and support services to people living with the condition.

Registered charity number 1197257
www.cavernoma.org.uk

When is Cavernoma Awareness Day?

Cavernoma Awareness Day will take place on the 14th of June 2025.