Please request to join our private Facebook group for Black patients affected by cerebral cavernous malformation (CCM). Parents and caregivers are also invited to join.
We also host bi-weekly Zoom support groups with invited expert speakers. Contact Jessica Biggs at firstname.lastname@example.org to learn more.
The largest clinical and research databases of cavernous malformation (CCM) patients in the US contain a disproportionately small number of Black patients. We don’t understand the reasons for this disparity yet, but 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.
To address the disparity, Alliance to Cure Cavernous Malformation 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. To learn more about our vision, please view our Breaking Barriers 2021 presentation.
Jessica Biggs, MPH has joined Alliance to Cure Cavernous Malformation as our Health Equity Program and Outreach Specialist. Her work includes listening to Black patients to help us to understand your diagnostic and care challenges, building a community of Black patients to optimize support and disease knowledge, working with other organizations and media to increase awareness of CCM in the larger Black community, and evaluating Alliance to Cure Cavernous Malformation’s programs and Centers of Excellence with a DEI lens to improve care.