Up Coming Events
We run regular virtual events and in-person meet-ups, including information webinars and supportive sessions for people affected by cavernoma. As a small charity supported by volunteers, we do our best to reach as many people as possible and make events accessible to all.
Monthly Events
Community Chat (Open to all)
11:00 on the 2nd Thursday of every month (except August)
A great opportunity to meet, chat & share experiences online with others affected by cavernoma.
Click here to register
Our online monthly events and webinars take place on Zoom. Not used Zoom before? Click here for a guide on using Zoom.
During our Community Chats, we often share helpful resources. Below are the links shared at our most recent meet-up:
Group Therapy
These themed groups run as a 4-part series over eight weeks, meeting fortnightly on Thursdays from 19:30 to 21:00. They offer a gentle, supportive space to share or listen. Open to UK-based CAUK members aged 18+ where the theme is relevant. The dates below are all for 2026:
- Newly diagnosed: 27 Aug, 10 Sep, 24 Sep, 8 Oct
- Spinal cavernoma: 3 Sep, 17 Sep, 1 Oct, 15 Oct
- Brainstem cavernoma: 22 Oct, 5 Nov, 19 Nov, 3 Dec
To sign up, email helpline@cavernoma.org.uk. If no suitable group is available and you are non-UK resident, you are welcome to join our monthly community chat.
With thanks to Axion Neuromonitoring for generously supporting this service.
Webinars
‘Cavernomas: Understanding Your Diagnosis and Care’ with Professor Peter Whitfield, Consultant Neurosurgeon
Wednesday 16th September, 7.30pm Register
This webinar will explore the surgical management of cavernoma, including when surgery may be considered and what it involves. Professor Whitfield will explain how decisions are made, the different approaches used, and what factors can influence outcomes.
Lived Experience Panel – Spinal Cavernoma
Wednesday 18th November, 7.30pm Register
In this special webinar, three members of the Cavernoma Alliance UK community will share their personal experiences of living with a spinal cavernoma. Together, they will talk about their journey from diagnosis onwards, including symptoms, treatment decisions, surgery where applicable, recovery, and the physical and emotional impact of living with a rare condition.
Annual Conference
Annual Conference
Saturday 3rd October 2026
Join us for our 2026 Annual conference!
This year we’ll be hosting our main event online allowing you to join from the comfort of your own home! We have a fantastic line up of expert speakers bringing you the latest developments in cavernoma, as well as the chance to ask your questions, and connect with others in our Community Chat session, as well as our AGM.
And for those who want to meet face to face we’re also hosting a London meet up on the very same day, hosted by members of the friendly CAUK team. Here you’ll be able to watch all of the conference presentations together on a big screen, while also having plenty of opportunities throughout the day to meet and chat with other attendees over lunch and refreshments, which will be provided.
Tickets for online or in person are free but you must register in advance. Please note spaces for our London meet up are limited, so please do book early to secure your place!
To find out more details or register please click here .
For emotional and practical support please contact us, please see our contact page