Online Community

Find cavernous malformation support groups and ways to help.

Zoom Support & CollabORation Groups

Support Groups. We host cavernous malformation support groups via Zoom on Mondays and Thursdays. Send us questions or topics you’d like to discuss at

Regional Collaboration Groups. Meet your local cavernous malformation community! Our 15 regional collaboration groups on Zoom are dynamic platforms for planning in-person activities and fundraisers within specific U.S. regions. We meet each month, and cavernous malformation patients, caregivers, and allies are invited to join. Email to find out how to join a group near you.

Facebook GROUPS

Main Group. We have an active community on Facebook. Even if you do nothing else on Facebook, please consider joining our private Alliance to Cure Cavernous Malformation Facebook Group to give and receive support from other Alliance to Cure Cavernous Malformation members. You must request to join.

Regional Groups. We host the following U.S. regional groups on Facebook: Northeast, Mid-Atlantic, Southeast, Great Lakes/Central Plains, Southwest, Rocky Mountains, Pacific.

Subgroups. We host these subgroups on Facebook: Parents, Members with Brainstem Lesions, Members with Spinal Lesions.

International. Many of our international affiliates host Facebook groups. Links to these can be found on our International Cavernoma Groups page.

Social Media

For updates and expert videos, please subscribe to our YouTube channel and follow us on Facebook, Instagram, and LinkedIn.