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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

Symptoms

Causes

FAQS

DIAGNOSIS

Diagnosis

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

Treatment & Surgery

Catheter Information

Find an Adult Care Specialist

Centers of Excellence

LONG-TERM CARE

Bladder Exstrophy in Adults

Adult Health & Wellness

Mental Health & Emotional Well-Being

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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Daily Life & Support
Practical tools, emotional support, and everyday resources for living with bladder exstrophy.
EVERYDAY LIFE

Living With Bladder Exstrophy

School Life

Bathroom Toolkit

BE Dry

EMOTIONAL & COMMUNITY SUPPORT

Support Groups

Patient Stories

Support

EDUCATION RESOURCES

Videos

Webinar

Bladder Exstrophy App

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

Annual Conference

Blogs

Global & Advocacy

Advocacy

Global Impact

International Resources

Provider & Collaboration

Medical Advisory Council

Adult Patient Advisory Council

Join us in Los Angeles, CA this summer for the International Exstrophy Conference! July 17 & 18, 2026

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

Our Why

Leadership

Advocacy

IMPACT

BE Dry

Global Impact

Research & Articles

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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Tag CHLA

17 Jul

El milagro perfecto de Rosina

Rosina comparte la historia de su hija, Fátima, también conocida como "Mily", y su viaje con extrofia cloacal en el Children's Hospital Los Angeles.

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15 Jul

Rosina’s Perfect Miracle

Rosina shares the story of her daughter, Fatima aka “Mily”, and their journey with cloacal exstrophy at Children's Hospital Los Angeles.

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20 Feb

2019 Conference Videos Now Available!

Couldn't make it to the 2019 Conference? Sessions on coping with exstrophy now available!

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2 Aug

That’s a Wrap! CHLA Creates a Memorable Experience at 2019 International Exstrophy Conference

The 2019 International Exstrophy Conference was a huge success, mostly due to the dedication and planning of the team at Children’s Hospital Los Angeles. Our heartfelt thanks goes out to […]

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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 […]

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