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.
To guide families affected by bladder exstrophy, and to ensure that all patients receive honest, evidence-based, and ethical care from pediatric urologists and surgical teams, our Medical Advisory Board put together these guidelines and best practices.
Families navigating a rare and complex diagnosis deserve transparent information, scientifically grounded counseling, and care that prioritizes both outcomes and lived experience. This commitment to integrity and education shapes everything we do — and it defined our work throughout the past year.
A-BE-C continued to extend its impact across the world. Highlights included significant engagements in Spain, where A-BE-C strengthened international partnerships that support families and clinicians. These efforts advance care and awareness beyond borders, reinforcing the global support network for individuals affected by bladder exstrophy.
In Uganda, A-BE-C’s all-volunteer team conducted its sixth annual surgical workshop at the EMERGENCY Children’s Hospital, providing expert surgical care, mentoring local healthcare providers, and fostering community education for more than 100 children and families.
Recognizing the challenges adults with bladder exstrophy face in finding knowledgeable providers, A-BE-C launched the Adult Provider Directory. This tool connects adult patients with healthcare professionals experienced in caring for complex congenital conditions — a major step forward in supporting lifelong care needs.
This year, A-BE-C honored Dr. Joseph Borer with the Grady Humanitarian Award in recognition of his extraordinary contributions to pediatric urology and compassionate care for patients and families. His work embodies A-BE-C’s commitment to excellence, integrity, and service.
A-BE-C was also pleased to welcome two new International Centers of Excellence — institutions recognized for meeting the highest standards of treatment and long-term care for complex congenital conditions including bladder and cloacal exstrophy. These additions expand access to specialized, multidisciplinary care for families worldwide.
As the year closes, A-BE-C extends gratitude to all families, supporters, clinicians, and partners who make this work possible. With continued collaboration and shared commitment to ethical, evidence-based care, the community is poised for further growth and impact in the year ahead.