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. We're working towards a cure and better management for cavernoma, but in the meantime we can support you by offering guidance, reassurance, medical information, and counselling. We're member led, so we're constantly evolving our services and making sure we're delivering the best for you.
We know that it can be scary when you're first diagnosed, as we've been in the same position ourselves. We offer a free counselling service for members and also offer 1:1 telephone support, online support groups, and wellbeing retreats, all full-funded. Our UK-based charity is run by volunteers who have been affected by cavernoma and we're here to support you on your cavernoma journey, so you don't have to do it alone!
We know how difficult it can be to understand cavernoma - especially when no one's heard of it and so little is known. This small uk-based charity aims to spread awareness and provide educational workshops to clinicians and other medical professionals so that they better understand your needs - so you feel heard!
We will be helping to spread the word about Cavernoma and increase awareness! Our Raspberry Day, launched in 2018, is an annual cavernoma awareness day.