Understanding Exstrophy
Learn the basics of bladder exstrophy, diagnosis, and what to expect after diagnosis.
GETTING STARTED

I’m New Here

What is Bladder Exstrophy

Living With Bladder Exstrophy

Symptoms

Diagnosis

Causes

FAQS

LIFE WITH BLADDER EXSTROPHY

Newborn Care

Exstrophy in Adolescence

Lifelong Care

Newly Diagnosed? Start Here

Receiving a diagnosis of bladder exstrophy can feel overwhelming. Explore trusted information, understand next steps, and connect with resources designed to support your family from the beginning.

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Centers of Excellence

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Patient Care & Research
Explore treatment options, long-term care, specialists, and medical resources.
TREATMENT

Treatment & Surgery

Pediatric Centers of Excellence

EXSTROPHY IN ADULTS

Adult Health & Wellness

Find an Adult Care Specialist

RESEARCH

Research, Articles & Updates

L.I.F.E. Outcomes Survey

Finding the Right Care Matters

ladder exstrophy is a rare and complex condition that benefits from experienced medical care. Learn about treatment approaches, specialists, and long-term care resources.

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Resources
Practical tools, emotional support, and everyday resources for living with bladder exstrophy.
EVERYDAY LIFE

Catheter Information

Bathroom Toolkit

Bladder Exstrophy App

EDUCATIONAL RESOURCES

Videos

Webinars

Bladder Exstrophy Books

Support Beyond Surgery

Living with bladder exstrophy involves more than medical care. Discover practical tools, emotional support, school resources, and wellness guidance for every stage of life.

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Community Support
Connect with support groups, conferences, global programs, and community stories.
Community

Annual A-BE-C Conference

Support Groups

Patient Stories

Global & Advocacy

Advocacy

Global Care

International Groups & Resources

News & Events

Blog

Be Part of a Community
By working together, we can create lasting change for individuals and families affected by bladder exstrophy.

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About A-BE-C
Learn about our mission, leadership, advocacy efforts, and global impact.
ABOUT

Mission

Leadership

Patient Advisory Council

Medical Advisory Council

OUR IMPACT

Global Impact

Advocacy

GET INVOLVED

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Fundraise

Making a Global Impact

A-BE-C works to improve access to care, education, advocacy, and support for individuals and families affected by bladder exstrophy around the world.

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Centers of Excellence

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Tag Boston Childrens Hospital

15 Sep

Now Available: 2025 International Exstrophy Conference Videos

The 2025 Annual Exstrophy Conference was held in Boston, MA and proudly hosted in conjunction with Boston Children’s.

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6 Jul

8 U.S. hospitals are best-in-class for bladder exstrophy

The Association for the Bladder Exstrophy Community (A-BE-C) wants to shorten the time it takes families to find complete and effective care for their children born with bladder or cloacal exstrophy. That’s why A-BE-C is launching a Centers of Excellence program that recognizes best-in-class care. The first eight U.S. hospitals to report meeting its rigorous criteria […]

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24 Oct

Mental health providers join A-BE-C’s board of advisors

We are pleased to announce that three mental health providers have joined the advisory board of the Association for the Bladder Exstrophy Community (A-BE-C). All three specialize in pediatric urology and are active in the bladder and cloacal exstrophy community. Many of the world’s leading medical experts in the treatment of bladder exstrophy have long […]

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