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You may remember a survey conducted earlier this year by Seattle Children’s and A-BE-C regarding adult females with exstrophy and their long-term sexual, reproductive, and urinary outcomes. We received an overwhelming response thanks to our amazing BE community.

The research team at Seattle Children’s has been focused on adding the patient perspective to the body of research on bladder exstrophy. The paper, “Patient-reported outcomes in adult female bladder exstrophy patients: A study of long-term sexual, reproductive, and urinary outcomes using social media”, focused on the experience for people living with this condition from their own perspective.

Dr. Katie Canalichio, lead author, has been asked to present the paper at the Pediatric Urology Fall Congress Meeting taking place this September in Scottsdale, Arizona to an audience of over 500 pediatric urologists.

Thank you to everyone who participated. Your voices are being heard and we’re proud that organizations like the Societies for Pediatric Urology are starting to look to A-BE-C for information and expert opinions.