Breaking Barriers for Black Health Empowerment

Background

This Problem Crosses Rare Diseases

There are 7000 rare diseases, affecting 10% of Americans.  4.3 million Black Americans have a rare disease. Aside from a few rare diseases, such as sickle cell and lupus that disproportionately affect Black Americans, there are no initiatives to find, diagnose, and engage Black Americans who have rare diseases. Patient groups tend to use a one-size-fits-all engagement approach that is not working for this community.

 

Our Work

To address the disparity for Black patients with cerebral cavernous malformations (CCM), the  Alliance to Cure Cavernous Malformations has received generous funding from the Julian Grace Foundation and Global Genes to lead a national effort we have named Breaking Barriers for Black Health Empowerment.