In the loop
Welcome to the Cavernoma Society. We’re here for anyone whose life has been touched by cavernoma.
Our charity was created out of lived experience, with a deep understanding of how overwhelming a diagnosis can feel. Whether you’re newly diagnosed, supporting a loved one, or further along in your journey, you’ll find kindness, connection, and practical support here.
From special days like Raspberry Day to our Heal Your Brain Retreats, we’re all about making sure no one faces cavernoma alone.
Looking deeper
Being told you have a cavernoma, or finding out someone you love has the condition, can feel frightening and overwhelming, especially if it’s something you’ve never heard of before. You don’t have to figure it out alone — we’re here to explain things clearly, answer your questions, and guide you step by step as you find your way through your cavernoma journey.
Looking for specific information?
Open doors
We welcome everyone into our community and can help you connect with others who may be nearby, or who share a similar lived experience. Sometimes, just knowing someone else truly understands can make all the difference.
We can also put you in touch with medical specialists who may be able to offer a second opinion — though availability can vary depending on where you live. And if you need extra support, we can write referral letters to your GP to request neuro-rehabilitation services on your behalf.
Our door is always open, and we’ll walk alongside you every step of the way.