The Association for the Bladder Exstrophy Community (A-BE-C) is an international support network for patients and families living with bladder exstrophy. We are united in a commitment to ensuring that all people affected by bladder exstrophy have the opportunity to realize their greatest life purpose and potential.

Our community includes individuals living with bladder exstrophy, parent-exstrophy support groups, health care providers who work with patients and families living with bladder exstrophy, and others who share our commitment.

We assist patients and families living with bladder exstrophy by providing education, support, and resources to help them navigate the medical and psychosocial issues relating to exstrophy.

A-BE-C is fortunate to have 15 experts in bladder exstrophy advising and guiding our work as members of our Medical Advisory Council.


Funding for A-BE-C’s operations and programs comes from donations, sponsorships, and support from philanthropic foundations. We are especially grateful to the GE Foundation for supporting recent projects to expand our reach and social impact, including this website.


Pamela Block, Executive Director

As a mother of a child with bladder exstrophy and  an accomplished business ...

Tom Exler, Vice President

Born with bladder exstrophy, Tom Exler has been a champion for raising awaren...

Jeffrey A. Niezgoda, MD, Founder and President Emeritus

Following the 1989 birth of a son with bladder exstrophy, Dr. Jeffry Niezgoda ...