Guidance and next steps for families after diagnosis
Connect with families, resources, and community support
Clear, trusted information about the condition and care
The Association for the Bladder Exstrophy Community (A-BE-C) connects families, patients, and medical professionals to improve care and provide trusted resources for individuals living with bladder exstrophy.
If you have recently received a diagnosis or are looking for information about bladder exstrophy, we are here to help guide you.
Bladder exstrophy is a rare and complex congenital condition that develops early in pregnancy, affecting how the bladder and surrounding structures form during fetal development. At birth, the bladder is open and exposed on the lower abdominal wall rather than enclosed within the body.
Although bladder exstrophy is rare, with specialized surgical care and lifelong follow-up, individuals with bladder exstrophy can grow, develop, and lead full, meaningful lives.
Learn more about the condition in our guide:
If you are new to bladder exstrophy, these resources can help you understand the condition and the treatment journey.
Understand the physical signs and differences present at birth.
Learn how doctors diagnose the condition before or after birth.
Understand surgical repair and treatment options.
Bladder exstrophy affects individuals throughout their lives. A-BE-C provides resources and support for patients and families at every stage of the journey.
Explore daily life, school, travel, and long-term wellbeing.
Educational videos and webinars provide valuable insights from medical experts and members of the bladder exstrophy community.
Featured topics include:
A-BE-C is an international network that brings together patients, families, medical professionals, and advocates working to improve care and support for everyone affected by bladder exstrophy.
Through community events, conferences, and support programs, we help individuals and families connect with others who understand their experience.
A-BE-C continues to expand support, education, and treatment opportunities for the bladder exstrophy community around the world.
Our work includes:
Many families and individuals affected by bladder exstrophy have shared their journeys, offering encouragement and hope to others facing similar challenges.
These stories remind us that no one has to navigate this journey alone.
Families facing a bladder exstrophy diagnosis often ask the same question: Where can I find experienced care?
A-BE-C Centers of Excellence represent healthcare institutions that have demonstrated a commitment to providing comprehensive, evidence-based care for bladder and cloacal exstrophy. These programs meet rigorous standards for treatment, follow-up care, patient education, and long-term outcomes.
Whether you are newly diagnosed or seeking ongoing care, our Centers of Excellence can help connect you with specialized teams experienced in treating exstrophy at every stage of life.
Your support helps A-BE-C expand access to education, advocacy, and care for individuals and families affected by bladder exstrophy worldwide.
