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 congenital condition in which the bladder and lower abdominal wall do not close properly during fetal development. At birth, the bladder forms outside the body and requires specialized surgical treatment and lifelong medical care.
Although bladder exstrophy is rare, advances in pediatric urology and reconstructive surgery have greatly improved outcomes. With proper treatment and support, many individuals with bladder exstrophy grow up to live active and fulfilling 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.
Your support helps A-BE-C expand access to education, advocacy, and care for individuals and families affected by bladder exstrophy worldwide.
