From March 2–5, 2025, A-BE-C proudly took part in the AUA Advocacy Summit in Washington, D.C.—a powerful event that brings together urologists, patient advocates, and policy makers to influence healthcare legislation and elevate the needs of the urologic patient community.

Representing A-BE-C were Adult Patient Advisory Council (APAC) members, Kim Allen and Gery Deer, who helped amplify the voice of our bladder exstrophy community at every turn. One of the standout moments of the summit was A-BE-C’s participation in the Patient Advocacy Connections Program, which provided a meaningful platform to connect with fellow advocacy groups and strengthen visibility across the American Urological Association (AUA) network.

But perhaps the most impactful part of the summit was joining forces with urologists on Capitol Hill. Kim and Gery accompanied medical professionals in meetings with Congressional representatives, where they shared personal stories and highlighted the real-life challenges faced by bladder exstrophy patients and families. These conversations put a face—and a name—to the need for thoughtful, patient-centered healthcare policy.

Our mission is always to support and empower families affected by bladder exstrophy, and advocacy plays a critical role in that work. The AUA Advocacy Summit gave us the opportunity to speak directly to the decision-makers who can make a difference—and to ensure that the bladder exstrophy community is not just seen, but heard.

Together, we’re turning awareness into action.