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:
- Supporters (carers): 23 Apr, 7 May, 21 May, 4 Jun
- Newly diagnosed: 11 Jun, 25 Jun, 9 Jul, 23 Jul
- Familial cavernoma: 18 Jun, 2 Jul, 16 Jul, 30 Jul
- 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.
In-Person
Annual Conference
Saturday 3rd October 2026
Join us in central London at a fully accessible venue, for a full day of talks, discussion and connection for people living with cavernoma. The programme will feature leading clinicians, lived-experience sessions and opportunities to ask questions, as well as our AGM. Tickets are kept as affordable as possible, with free concession places available to anyone who needs one. Key sessions will also be recorded for those unable to attend in person. Full details are available on our registration page.
Webinars
‘Preparing for cavernoma surgery? What to expect’ – with a Lived Experience panel
Wednesday 29th April, 7.30pm Register
Whether you have surgery coming up, or are thinking about it for the future, this webinar is for you. Through shared experiences, our panel will explore what to expect before, during and after surgery, including both adult and paediatric neurosurgery, as well as stereotactic radiosurgery.
‘When a Cavernoma Bleeds: What Happens in the Brain and How Treatment Decisions Are Made’ – with Mr Christos Tolias, Consultant Neurosurgeon
Tuesday 26th May, 7.30pm Register
This webinar will explore what happens when a cavernoma bleeds, and how treatment decisions are made. Mr Tolias will explain how bleeding affects the brain, when surgery may be considered, and the factors that influence different approaches.
‘Recent strategies in surgically treating brainstem cavernoma’ – with Professor Helmut Bertalanffy, Consultant Neurosurgeon
Wednesday 10th June, 7.30pm Register
Brainstem cavernomas can be some of the most complex to treat. In this webinar, Professor Bertalanffy will share insights from over 30 years of experience, explaining how surgeons approach these delicate areas and how techniques have developed to improve outcomes.
‘The Science of Cavernoma’ – with Andrea Perrelli PhD
Wednesday 15th July, 7.30pm Register
What is a cavernoma, and why does it behave the way it does? In this webinar, Andrea Perrelli will explain the science in clear, accessible terms, helping you understand how cavernomas form, why symptoms happen, and how research is working towards future treatments.
‘Surgical Management of Cavernoma’ 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.
For emotional and practical support please contact us, please see our contact page