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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
 
Here are links to the follow-up resources from the most recent community chat:

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.

  • 16th of January 2025, 10:00-12:00, register here 
  • 15th of May 2025, 17:30-19:30, register here 
  • 6th of September, 14:00-16:00, register here

One-off Events

Online Webinar: Cavernoma and Mental Health

19:30-20:30 on Wednesday the 29th of January via Zoom 

Click here to register

Join Dr Anita Rose, Consultant Clinical Neuropsychologist, and Robyn Hughes, CAUK’s counselling therapist, for a webinar on Cavernoma and Mental Health. Each will give a 20-minute presentation, followed by a 20-30 minute Q&A. The webinar will be recorded and available on our YouTube channel within 1-2 months.

Dr Rose is highly regarded in the field of brain injury and neurological conditions, with extensive clinical, research, and publication experience. She serves as a Patron, Trustee, and Clinical Advisor to several neurological organisations worldwide. Robyn Hughes, a qualified counselling therapist, has supported CAUK for over 6 years, applying a trauma-informed, psychodynamic approach. She also co-founded The Connection Space, a Community Interest Company offering therapeutic services in the Derbyshire Dales.

If you have any questions please email events@cavernoma.org.uk.

Online Webinar: Stereotactic Radiosurgery (SRS) and Cavernoma

19:30-20:30 on Wednesday the 26th of February via Zoom 

Click here to register

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.

If you have any questions please email events@cavernoma.org.uk.

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 

Click here to register

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.

If you have any questions please email events@cavernoma.org.uk.

For emotional and practical support please contact us, please see our contact page