You Are Part of a Community
No one has to navigate bladder exstrophy alone. Through shared experiences, education, and connection, the bladder exstrophy community continues to support individuals and families around the world.
Connecting with others who understand your experience can make a meaningful difference.
Bladder exstrophy is a rare condition, and many individuals and families find comfort, guidance, and reassurance through community support.
This page provides a list of online support groups including Facebook communities where you can connect with others, ask questions, and share experiences in a supportive environment.
Bladder exstrophy is a rare condition, and many families initially feel isolated. Connecting with others who share similar experiences can help you feel supported and informed.
Whether you are a parent, patient, or caregiver, support can come in many forms. From peer connections to educational resources and advocacy opportunities, A-BE-C helps bring the bladder exstrophy community together. Use the resources below to find the support that best fits your needs.
Explore support networks and resources available around the world. A-BE-C works to expand global access to care, education, and community support.
Courage to Shine™ was founded to acknowledge, motivational and inspirational individuals and/or groups of patients whom have overcome congenital genitourinary birth defects and/or major urological surgeries in their childhood (but not limited too), and have the courage, strength and determination, to transform that adversity to triumph later in life.
Support groups can help individuals and families:
Whether you are newly diagnosed or have been navigating this journey for years, community support can be an important part of overall well-being.
Each group may have a different focus, such as:
We encourage you to explore different groups to find the one that feels most comfortable and supportive for you.
Online support groups can be a valuable source of connection, but it’s important to remember:
You must have a Facebook account and request permission to join these groups:
No one has to navigate bladder exstrophy alone. Through shared experiences, education, and connection, the bladder exstrophy community continues to support individuals and families around the world.