Researchers at Seattle Children’s Hospital in collaboration with Association for the Bladder Exstrophy Community (A-BE-C) recently published results of a study surveying adult male patients about genital appearance and erectile function. It is the first research study to focus on
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