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

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What is Bladder Exstrophy

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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

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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

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EDUCATION RESOURCES

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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.
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Global & Advocacy

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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.
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Our Why

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IMPACT

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Global Impact

Research & Articles

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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 Dr. Ranjiv Mathews

11 Apr

Worth the Wait

After two years of delays due to Covid, and then another delay due to an Ebola outbreak in Uganda, the US team was finally able to hold our second workshop at Uro Care in Kampala. Our committed team treated, connected with and supported 23 families from all over Uganda.

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22 Sep

Expanding Our Reach

Over the past 3 years A-BE-C has helped facilitate surgeries for children with bladder exstrophy in Uganda, and trained Ugandan surgeons in India with the goal to work with Uro […]

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1 Apr

Poster Presentation: The Uganda Exstrophy-Epispadias Complex Initiative

Developing a Program for Transference of Complex Surgical Reconstructive Skills

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10 Nov

Urinary tract infections (UTIs) in bladder exstrophy patients

People with bladder exstrophy are at greater risk for developing urinary tract infections. (UTIs). As part of Bladder Health Month, Dr. Ranjiv Mathews, Director of Pediatric Urology and Professor at SIU […]

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