Cavernoma Society

A UK-based charity supporting those affected by cavernoma

Our Story

The Cavernoma Society was set up in late 2018 and officially achieved its charity registration in July 2019. It has been created to support cavernoma patients, their families, carers, and friends, through the cavernoma journey - from diagnosis, to the first medical appointment, to surgery, or living with a cavernoma. We will be working with medical professionals, other charities and groups, and you, our members, so that we're providing the best, most current  news and support for you all.

About Us


Emotional Support

We know that it can be scary when you're first diagnosed, that's why we're here to help and will connect you to others who can too!


Practical Support

We know how difficult it can be to understand this condition yourself, let alone explain it to friends and family. We are working to provide a solition! 



We will be helping to spread the word about Cavernoma and increase awareness! Keep checking back - we can't wait to share our plans with you!