Alliance To Cure Cavernous Malformation

Alliance to Cure Cavernous Malformation is a patient advocacy organization whose mission is to inform, support, and empower individuals affected by cavernous malformation and drive research for treatments and a cure. Cavernous angiomas, also known as cavernous malformations or cavernoma, are brain and spinal blood vessels lesions that can cause strokes and seizures when they hemorrhage. They can be inherited and are a leading cause of stroke in children and young adults. Angioma Alliance connects patients and advances research. Our unique assets are a DNA/Tissue Bank, an International Patient Registry, an annual international Scientific Meeting attended by every major cavernous angioma research laboratory in the world, a free genetic testing program, and a network of Centers of Excellence. Patients and their families offer mutual support through a one-on-one peer support program, online discussion groups, and family conferences. They receive accurate information about the illness on our website and in our literature. We sponsor the Baca Family Historical Project in the US Southwest. The aim of the program is to connect the descendants of Cristobal Baca II and his wife, who are thought to be the founders of the Common Hispanic Mutation, the cause of cerebral cavernous angiomas in a significant part of the original Hispanic community in the Southwest. The Baca Family Historical Project offers health provider education, public conferences, free genetic testing, and patient support opportunities. Angioma Alliance has spawned sister organizations in the United Kingdom, Canada, Italy, Spain, Brazil, the Philippines, and Sweden.