The largest clinical and research databases of cavernous angioma (CCM) patients in the US contain a disproportionately small number of Black patients. We do not understand the reasons for this disparity yet, but we suspect it is the result of a combination of lower diagnosis rates and, possibly, mistrust of medical research efforts. With our new knowledge about interventions like diet and treating sleep apnea, it is more critical than ever that all patients receive timely diagnosis, information, and opportunities to participate in research and clinical trials. In fact, the Federal Drug Administration expects that treatment developers will plan trials that reflect the populations that will be taking the medicines.
To address the disparity, Angioma Alliance has received generous funding from the Julian Grace Foundation to hire an individual to lead a national effort we have named Breaking Barriers. To learn more about our plans, please view our Breaking Barriers 2021 presentation. If you know someone who may be interested in the position, please see our Health Equity Program Development and Outreach Specialist position announcement.