Children with epidermolysis bullosa (EB) face large life challenges from the get-go. The genetic disorder leaves skin extremely fragile and with visible rashes and painful blisters. According to an NBC News report, approximately 25,000 to 50,000 Americans, mostly children, live with EB and people who don’t receive treatment often die by the age of 30.
But a clinical trial led by Jakub Tolar, M.D., Ph.D., professor and pediatric blood and marrow transplant physician at the University of Minnesota Medical School, may help improve the quality of life for those diagnosed with EB.
“This is one of the most difficult to treat disorders and a very painful disorder,” Tolar said in the NBC News report. “Before we started, there was absolutely nothing that would change the outcome of these children.”