Seen, Heard and Fighting Back: FSGS Awareness, Scientific Advancement, and Community

In recognition of National FSGS Awareness Day, the ‪@nationalminorityqualityforum‬ hosted “Seen, Heard and Fighting Back: Stories of FSGS, Scientific Advancement, and Community,” a webinar focused on raising awareness about Focal Segmental Glomerulosclerosis, advancing early detection, and highlighting the urgent need for advocacy and action. FSGS is a rare but aggressive kidney disease and a leading cause of kidney failure. It can affect both children and adults, often progresses without routine screenings, and may not be diagnosed until a patient is already on the path to dialysis or transplant. In some communities, FSGS is especially devastating. Black Americans represent nearly 60% of all FSGS cases and are nearly four times more likely than White individuals to experience kidney failure. This conversation looks upstream—before dialysis and transplant—to explore what is driving people toward kidney failure in the first place and how awareness, scientific advancement, earlier diagnosis, and equitable treatment access can help rewrite the story of FSGS. Moderator: Britt Weinstock, PhD, MA Senior Director, State and Federal Policy Center for Public Policy, National Minority Quality Forum Panelists: Destyn Fuller-Hope Director, Screenwriter, Storytelling Advocate Kidney Transplant Recipient Living with FSGS Gentzon Hall, MD, PhD Assistant Professor of Medicine, Nephrology Duke University School of Medicine Director, Mentored Internship Program in Nephrology, GloMCon Foundation Matthew Johnson Director, Government Relations and Advocacy NephCure Learn more about the National Minority Quality Forum: https://www.nmqf.org #FSGS #rarekidneydisease #kidneyhealth #healthaccess #nmqf