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.
In-Person Meetups for Brain Awareness Week, 10-16 March 2025
From the 10th to the 16th of March 2025, we’ll be holding in-person meet-ups in support of Brain Awareness Week. Hosted by Cavernoma Alliance UK volunteers, these informal gatherings offer a great chance to connect with others in a relaxed setting. Two meet-ups are especially for children with cavernoma at inclusive soft-play centres, with entry costs covered by us. Places are limited.
Everyone:
- Scotland – Tuesday 11th March, 11:00-14:00
- West Midlands – Wednesday 12th March, 10:30-13:30
- West Sussex – Thursday 13th March, 11:00-13:00
- Online – Thursday 13th March, 11:00-12:00
- Essex – Friday 14th March, 09:00-13:00
- Surrey – Saturday 15th March, 10:30-12:30
- London – Saturday 15th March, 11:00-13:00
- East Anglia– Saturday 15th March, 11:00-13:00
- Manchester – Saturday 15th March, 13:30-15:30
- Derbyshire – Saturday 15th March, 14:00-16:00
Children and Supporters:
More meet-ups to follow for Wales. To express your interest please email helpline@cavernoma.org.uk and we’ll let you know when the times and dates are confirmed.
No meet-up near you? We’re always looking for volunteers to help bring people together in their communities. If you’d like to host a meet-up register your interest here.
Alongside the events during Brain Awareness we’ll also be hosting a meet-up in Yorkshire on Thursday 10th April, 11:00-13:00. To register for this event click here.
For anyone questions about our our meet-ups email helpline@cavernoma.org.uk. Please note this inbox is managed by volunteers and we will reply within 3-5 working days. Please note you will need to be a member to join our meet-ups. Membership free and quick to arrange, just click here.
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
Online Webinar: Stereotactic Radiosurgery (SRS) and Cavernoma
19:30-20:30 on Wednesday the 26th of February via Zoom
Join us for a webinar with Mr. Matthias Radatz on Stereotactic Radiosurgery (SRS) for cavernoma. The 30-40 minute presentation will be followed by 20-30 minutes of Q&A and will be available on our YouTube channel within 1-2 months. Mr. Radatz is a consultant neurosurgeon at Thornbury Radiosurgery Centre in Sheffield, specializing in Gamma Knife radiosurgery for cavernomas, brain tumors, and other CNS conditions. He has extensive experience and has held key roles at Royal Hallamshire Hospital and the National Centre for Gamma Knife Radiosurgery. Additionally, he is the program director for the Yorkshire and Humber Deanery.
Online Webinar: Management of Cavernoma Related Epilepsy: Patient Selection, Open Surgery and LITT
19:30-20:30 on Wednesday the 19th of March via Zoom
Join us for a webinar with Mr Jibril Farah on Management of Cavernoma Related Epilepsy. The 30-40 minute presentation will be followed by 20-30 minutes of Q&A and will be available on our YouTube channel within 1-2 months. Mr. Jibril Osman Farah is a Consultant Neurosurgeon and clinical lead at The Walton Centre. He specializes in functional and stereotactic neurosurgery, epilepsy, movement disorders (DBS), spasticity, neuro-oncology, and degenerative spinal conditions. Appointed in 2008 and on the GMC Specialist Register since 2007, he also serves on the editorial board of Acta Neurochirurgica and directs the fellowship program at the Walton Centre. In 2023, he joined the NHS England Clinical Reference Group for Neurosurgery and Spinal Services.
For emotional and practical support please contact us, please see our contact page