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

Give / Donate

Contact Us

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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2024 International Exstrophy Conference Videos

The 2024 International Exstrophy Conference was hosted by Children’s WI.

A special thank you to Ryan Hutto with Big Heart Productions, LLC for capturing this content and making it available to our community.

Opening Remarks

Presented by John Kryger, MD – Children’s WI

Welcome & Updates

Presented by: Pamela Artigas, Executive Director – A-BE-C

Patient Stories & Courage to Shine Winner

Interviews with MIBEC/BE families & Courage to Shine Winner , Rachel Althizer

Youth Rally: Encourage Self-Confidence and Independent Living

Presented by April Gimlin, A-BE-C Board Member & Youth Rally Founder

Philanthropy & Hudson’s Story

Presented by Stacey Bobber – Exstrophy Parent & Founder of Birdie’s for Bobbers

Patient Panel

Interactive session with those living or caring for someone with Exstrophy

MIBEC Philosophy & Approach

Presented by Dr. John Kryger – Children’s WI, MIBEC

Can Repaired Bladder Exstrophy Patients Void Long Term?

Presented by Dr. Travis Groth – Children’s WI

Creation of a Dedicated Anesthesia Exstrophy Team: Challenges and Lessons Learned

Presented by Kristin Labovsky, MD – Children’s WI

Presentation of the Richard Grady Humanitarian Award

Presented to Dr. Joao Pippi Salle

MIBEC 8 Year Outcomes

Presented by Dana Weiss, MD – Children’s Philadelphia, MIBEC MD

Global Solutions for a Global Problem

Presented by Aseem R Shukla, MD, FAAP Children’s Philadelphia, MIBEC MD

Key Differences Between Cloacal Exstrophy and Classic Bladder Exstrophy

Presented by Ted Lee, MD – Boston’s Children’s, MIBEC MD

The Case for Normal Childhood: How Movement and Activities Can Support Bladder Exstrophy Success

Presented by Elizabeth Roth, MD – Children’s WI, MIBEC MD

Provider Panel

Dr. Michael Mitchell, Dr. Elizabeth Roth, Dr. Travis Groth, Dr. Dana Weiss, Dr. Assem Shukla, Dr. Ted Lee, Dr. Joao Pippi Salle