Unique contribution of one patient advocacy organization in advancing cerebral cavernous malformation awareness and research

Advocacy organizations have long played a role in advancing care and research for patients affected by rare disease. Angioma Alliance has served traditional functions of organizing scientific meetings creating shared resources like tissue bank patient registry. Uniquely, the organization employed creative engagement methods subsidized genetic testing as well targeting special populations to expand participation understanding illness. Special include those with CCM3 mutations, CCM1 Common Hispanic Mutation, Black patients.