Up Coming Events
Every month we host a series of regular online events for all those affected by cavernoma. Meet, chat and share experiences with others who can really understand you! We also welcome guest speakers throughout the year to discuss topics related to cavernoma – keep an eye on our calendar for more info.
Monthly Events
Our online monthly events and webinars take place on Zoom. Not used Zoom before? Click here for a guide on using Zoom.
- Community Chat
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
- Therapeutic Group
19:30 on the 2nd Thursday of every month (except August)
Join a therapist knowledgeable about cavernoma for small group therapy online with monthly themes.
Click here to register
If you’re in need of support in-between support groups please get in touch with our helpline here. In addition to the information of this website you may also find it helpful to visit the website of our US sister organisation Alliance to Cure.
Volunteer Training
Over 50 volunteers help to run our helpline, buddying, meet-ups and more! If you’d like to become a volunteer sign-up for one of our 2025 Volunteer Training Sessions below and complete our short Volunteer Registration Form here. Any questions, please email Tracey@cavernoma.org.uk.
Please note: Volunteering is only available to residents of the UK, Channel Islands and the Republic of Ireland.
One-off Events
Registration is now OPEN for the CAUK Annual Conference 2025!
Saturday 21st June | 10am–4pm (BST) on Zoom
Join us for a full day of expert talks, community connection, and the latest updates. Whether you’re newly diagnosed or have lived with cavernoma for years, there’s something for everyone. Drop in for the sessions that matter to you – and by registering, you’ll get access to the full recording afterward. Agenda items include Cavernoma 101: Understanding Your Diagnosis, Managing the Overlooked Symptoms of Cavernoma and a supportive Community Chat session. We’d love for you to join us – wherever you are in the world! Come for one session or the full day.
Join Us to Celebrate 20 Years of Cavernoma Alliance UK
Saturday 11th October 2025 in London
In 2025, CAUK turns 20 – and we’re inviting our community to come together to celebrate this incredible milestone. Join us on Saturday 11th October 2025 in London for a special event with speeches from our founder Dr Ian Stuart and Connie Lee of Alliance to Cure, followed by a relaxed lunch and time to connect. Cavernoma can feel isolating, but CAUK has always been about community – and this celebration is for everyone who’s been part of the journey. Spaces are limited, so book now!
Virtual Snowdon/Yr Wyddfa Climb – Take on the Challenge Anywhere! 🌍🏔️
- Walk or hike locally
- Climb stairs at home
- Complete it all at once or over multiple days – it’s up to you!
Join us anytime during Cavernoma Awareness Month in June or on Cavernoma Day (14th June) to make an impact!
What you’ll receive
- A CAUK t-shirt and wristband
- A welcome pack with all the details
- A fundraising medal and certificate
- The chance to be featured on our social media
Brain Awareness Week 2026 Expression of Interest Now Open
From 9th–15th March 2026, CAUK volunteers will once again host local, friendly meet-ups across the UK to bring together those affected by cavernoma. Whether you’d like to attend or are interested in hosting, we’d love to hear from you! These volunteer-led events are a great chance to connect, share experiences, and support one another. Let us know your interest now to help us plan and make these meet-ups happen.
For emotional and practical support please contact us, please see our contact page