Introducing the Adult Exstrophy Provider Directory
We are thrilled to share some exciting news that has been months in the making. A-BE-C has officially launched our Adult Provider Directory—a first-of-its-kind resource designed to help adults with congenital urologic conditions connect with knowledgeable urologists who understand their lifelong care needs.
This project represents the best kind of patient–clinician collaboration. Our Adult Patient Advisory Council (APAC)—formed in 2024 to elevate the adult patient voice—worked hand-in-hand with Dr. Hadley Wood of the Cleveland Clinic to identify urologists for the directory. Dr. Wood is a long-time champion for our adult patient community who also serves on A-BE-C’s Medical Advisory Council, and was a wonderful mentor on this project.
We all know how challenging it can be to transition from pediatric to adult care—and how isolating and frustrating it feels to navigate a fragmented healthcare system. Many adult patients have gone years without seeing a urologist who truly understands their history. This directory will make it easier to find the right care and help reduce that sense of isolation. To be listed in our network, each urologist must have expertise treating exstrophy patients, and agree to partner with A-BE-C to expand support and streamline appointments for our patients.
We also recognize that even with contact information in hand, getting an appointment with a new provider can sometimes be difficult. That’s why our Adult Patient Advisory Council is here to help. If you encounter challenges connecting with any provider on the list, please reach out with the Appointment Assistance form on the Adult Provider Directory page—we’re ready to assist and to advocate for you.
Community participation is central to the directory’s success and both patients and providers can help us keep this living, growing resource up to date by submitting new providers through the Add a Provider form on the directory page. This spirit of collaboration is what keeps this project alive.
This directory is more than a list of names—it’s a bridge connecting patients, providers, and advocates who share a commitment to lifelong, compassionate urologic care. Our APAC council is proud to build this resource, and we look forward to helping more adults feel seen, supported, and empowered in their health journey.
