Alliance to Cure Cavernous Malformation

The Alliance to Cure Cavernous Malformation is a non-profit, charitable organization created with the mission to inform, support, and mobilize those affected by cavernous malformations (CCM, cavernous angioma, cavernoma) and drive research for better treatments and the cure. Cavernous malformations 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 chronic headaches. The goals of the organization are to: 1) Facilitate and participate in cavernous malformation research to achieve a complete understanding of the disease and facilitate clinical drug trials and other treatment improvements. 2) Provide disease and resource information to educate and improve the lives of people affected by cavernous malformations, caregivers, health professionals, researchers, policymakers, the media, and the general public. 3) Foster and promote a caring community to provide support. 4) Get people involved in advocacy and active participation toward a cure. The organization sponsors the annual international CCM scientific meeting, a Biospecimen Repository, a pre-clinical treatment testing program, a patient registry, and other research initiatives. It has a large, active patient community on Facebook and offers in-person patient conferences. It recognizes CCM Centers of Excellence, offers free genetic testing, and works to improve care. The Alliance hosts a range of DEI initiatives to engage and improve care for Black, Hispanic, and disabled patients.