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

Abstract

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 and creating shared resources like a tissue bank and a patient registry. Uniquely, the organization has employed creative patient engagement methods like subsidized genetic testing as well as targeting special populations to expand research participation and understanding of the illness. Special populations include those with CCM3 mutations, the CCM1 Common Hispanic Mutation, and Black patients.