2019 Conference Videos Now Available! - bladder exstrophy

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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Centers of Excellence

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The 2019 International Exstrophy Conference was hosted by Children’s Hospital Los Angeles (CHLA), and sessions focused on the various ways coping plays a role in living with exstrophy.

CHLA graciously recorded the sessions so we could make them available to our A-BE-C community.

Welcome

Presented by Pamela Artigas, Executive Director of A-BE-C

Intro & Overview

Presented by Evalynn Vasquez, MD

Life With Exstrophy

Presented by April Gimlen & Ana Gimlen LaFond

Transitioning to Adult Care

Presented by Dan Wood, Phd

Navigating the School System

Presented by Tavo Zavala & Paige Sable, LCSW

Disclosure of Exstrophy

Presented by Barbara Neilson, MSW

Importance of Research

Presented by Anthony Schaeffer, MD

Coping With Pain

Presented by Alyson Herme, PhD, Alvina Rosales, PhD & Rubi Buxto

Courage to Shine Winner

Briten Douglas

“Chance to Lose it All”

Performance by Adam Bruno