Angioma Alliance

About Angioma Alliance

The Angioma Alliance (AA) is a non-profit, charitable organization created by people affected by cavernous angioma. Cavernous angiomas are clusters of abnormal blood vessels found in the brain, spinal cord, and, rarely, other areas of the body. They can cause seizures, stroke symptoms, hemorrhages, and headache. Its goals are: 1) to ensure that everyone with cavernous angioma has access to informational materials written in layperson’s terms 2) to provide support for persons affected by the illness 3) to promote research and 4) to educate the public so that those affected by the illness will receive understanding and support. Its web site provides information about the illness, networking/support opportunities, updates on research, and information about participating in ongoing research studies. The alliance distributes patient education materials through neurosurgeons, neurologists, and genetics professional nationally. Angioma Alliance sponsors national family educational conferences, exhibits at medical conventions, and offers a toll-free number for support and education.

Related Rare Diseases: