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.

Explore Newly Diagnosed Resources
Give

Shop

Centers of Excellence

Contact Us
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.

Explore Centers for Treatment
Give

Shop

Centers of Excellence

Contact Us
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.

Find Support Resources
Give

Shop

Centers of Excellence

Contact Us
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.

Help Make a Difference →
Give

Shop

Centers of Excellence

Contact Us
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.

Learn About Our Mission
Give

Shop

Centers of Excellence

Contact Us

Tag dr. william reiner

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.

READ MORE

28 Oct

Now Available: 2024 International Exstrophy Conference Videos

The 2024 Annual Exstrophy Conference was held in Milwaukee, WI and proudly hosted in conjunction with Children’s Wisconsin.

READ MORE

13 Nov

2023 International Exstrophy Conference Videos

Realizing that care for the entire patient – beginning with appropriate surgical counseling and preparation, to psychosocial support and postoperative management – is key to successful outcomes, the sessions focused on the challenges patients and families face through a spectrum of discussions and provide tools to show that BE Doesn’t Limit ME!

READ MORE

8 Sep

Dr. William Reiner Receives 2023 Humanitarian Award

A-BE-C recently presented its Richard W. Grady Humanitarian Award to Dr. William Reiner, Child and Adolescent Psychiatry, Urology. Dr Reiner, a world-renowned Child and Adolescent Psychiatrist, spent his career focused on the psychological aspects of bladder exstrophy.

READ MORE