Our Why

Every child born with bladder exstrophy deserves access to safe, timely, and effective care.

But around the world, that is not always the reality. A-BE-C exists to change that.

The Reality

Bladder exstrophy is a rare and complex condition that requires specialized surgical care and long-term support.

In many parts of the world:

For many, this leads to a lifetime of physical challenges, social isolation, and limited opportunity.

Why This Matters

Without access to proper care, children living with bladder exstrophy often face:

These challenges are preventable with the right care, resources, and support.

Ongoing Challenges

Even when surgery is available, patients in resource-limited settings often face additional barriers:

These gaps can significantly impact long-term outcomes.

Making a Difference

A-BE-C is working to improve outcomes and expand access to care through:

One example is the annual international workshop, where healthcare professionals from around the world receive hands-on training in advanced techniques to treat bladder exstrophy.

Long-Term Health Monitoring

Mission Statement

To act as the bridge connecting our international community to medical excellence and providing comprehensive support through education, advocacy, and research—ensuring every individual has the resources and opportunity to thrive.

Great Lakes Camp Out | Bladder Exstrophy

Our Vision

A world where every individual born with bladder exstrophy has access to safe, effective care and the opportunity to live a full and meaningful life.

Our History

Founded in 1989 by Dr. Jeffrey and Kathleen Niezgoda after the birth of their son with bladder exstrophy, A-BE-C was created to fill a critical gap in resources and support for families. What began as a grassroots effort has grown into a global community connecting and empowering individuals and families affected by the exstrophy-epispadias complex.
Newborn | Bladder Exstrophy

We Navigate the Journey Together

Because a diagnosis of bladder exstrophy shouldn’t mean a life of isolation or ‘just getting through’ surgery. We believe that every individual, regardless of where they live, deserves access to world-class care and a supportive community who understands their journey. We exist to ensure that medical excellence is matched by compassionate, lifelong guidance—so that every person has the opportunity to thrive at every stage of life.

Be Part of the Change

Together, we can expand access to care and improve lives around the world.

Help Support the Bladder Exstrophy Community

Your donation helps provide care, education, and life-changing support for families worldwide.