Cerebral cavernous angioma (CCM, cavernoma, cavernous malformation) is a disease that causes the formation of abnormal blood vessels in the brain and spinal cord that can hemorrhage and cause seizure and stroke at any age. The only current treatment is brain or spinal surgery.
Patient leader Cornelia Lee’s daughter Julia was diagnosed with CCM as an infant, and had four brain surgeries in her first four years. She founded Angioma Alliance with the support of patient families, expert doctors and researchers as a space for community, hope, and the advancement of treatments. As part of the Rare As One Network, the Angioma Alliance aims to expand their patient-driven research capacity with the goal of reducing barriers to diagnosis and accelerating a cure for CCM.