Centers of Excellence use the A-BE-C network to recruit study participants. The A-BE-C helps promote patient-centered studies in these collaborative efforts [22]. Social media is, in turn, used to improve patient outcomes and empower those with BEEC to be actively involved in the progression of care. Most BEEC research to date is focused on surgical outcomes and clinician-derived research priorities. There are few patient-reported studies or patient-generated or patient-directed research on the adult exstrophy community’s needs from their healthcare providers. In 2018, the A-BE-C began a new initiative to better meet the needs of a growing adult popula­tion with bladder exstrophy. The organization contacted their young adult and adult population with a survey and individual interviews to understand what adults with exstrophy need from their providers. Comprehensive care of young adult and adult patients fell into seven (6) major categories: teens and puberty, maintenance of childhood revisions and diversions, adulthood health maintenance, men’s and wom­en’s health, psychosocial concerns, and effective self-advocacy as an adult [21].