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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Tag courage to shine

28 Jul

2025 Courage to Shine Award: George Hunt III

George Hunt III received the 2025 Courage to Shine award at the International Exstrophy Conference in Boston, MA.

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13 Aug

Rachel Althizer Receives the 2024 Courage to Shine Award

Rachel Althizer, 32, received the 2024 Courage to Shine award at the International Conference in Milwaukee, WI.

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29 Apr

Comedian Paul Kerensa Shares Exstrophy Experience

The very entertaining Paul Kerensa recently hosted a funny, relatable, and encouraging show about his journey with exstrophy. The event was live on Facebook, but you can still view it here. Suitable for all ages!

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20 Aug

Briten Douglas – Survivor and 2019 Courage to Shine Award Recipient

Briten Douglas is this year’s recipient of the Courage to Shine award, setting an example with her perseverance and positive attitude throughout countless years of pain and adversity. Briten was presented with the award at the 2019 International Exstrophy Conference in Los Angeles on June 29 by Tom Exler, founder and chairman of Courage to Shine. Thank […]

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