At the 2026 A-BE-C Annual Conference in Los Angeles, Thomas was honored with the Courage to Shine Award in recognition of his remarkable journey and dedication to the bladder exstrophy community. In this inspiring reflection, he shares how bladder exstrophy shaped, but never limited, his life. From complex childhood surgeries to earning a PhD, traveling the world, hiking the Appalachian Trail, and becoming a research scientist and patient advocate, Thomas’s story is a powerful reminder that a diagnosis does not define a person’s future. His message offers hope, perspective, and encouragement for patients and families navigating every stage of the journey.
Read MoreHistoric Consensus: A New Era for Bladder Exstrophy Care
A-BE-C shares groundbreaking survey data from 133 bladder exstrophy families, sparking a historic global collaboration among leading surgeons focused on trust, transparency, and improving outcomes for every child.
Read MoreHonoring a Legacy: Dr. Paul Merguerian Receives the Richard Grady Humanitarian Award
The International Bladder Exstrophy Collaborative (IBEC) gathered for its 18th annual workshop. Amidst the intense focus of world-class surgeons from across the globe, we took a moment to honor a man who has spent his career serving the most vulnerable: Dr. Paul Merguerian.
Read MoreA Year of Knowledge, Connection and Care
As 2025 draws to a close, the Association for the Bladder Exstrophy Community (A-BE-C) reflects on a year defined by expanded global reach, strengthened resources, and meaningful community connections. From international collaboration to new tools for patients and families, the past year underscored the importance of empowering individuals through trusted information and supportive networks.
Read MoreStrengthening Global Connections for the Bladder Exstrophy Community
The Association for the Bladder Exstrophy Community (A-BE-C) recently joined international support organizations from around the world for the first-ever Global Congress on Advocacy and Community Collaboration—a landmark gathering dedicated to improving care, awareness, and connection for individuals and families affected by bladder exstrophy.
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