The quality of life for Ugandan bladder exstrophy patient Johnson (Ndyabagye) continues to improve since receiving his first surgery more than two years ago. You may remember first reading about him in 2016 as an untreated bladder exstrophy patient in
A team from A-BE-C, including Executive Director Pamela Block and Board Member Janet Gibson visited several bladder exstrophy patients living in Uganda in September 2018. Pamela Block shares the following reflections. It takes some time to reflect on the enormity
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As a bladder exstrophy patient and Master of Public Health candidate, Misty Blue Foster sees exstrophy from both sides of the equation: as an adult who knows firsthand the daily struggles and triumphs of living with the rare disease, and
The Association for the Bladder Exstrophy Community (A-BE-C) wants to shorten the time it takes families to find complete and effective care for their children born with bladder or cloacal exstrophy. That’s why A-BE-C is launching a Centers of Excellence program
Tommy Ludlow, the young recipient of the this year’s Courage to Shine award is already inspiring others to turn challenge into opportunity. Tommy received the honor, in part, because he is by all available accounts the first bladder exstrophy patient