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.
Support can make a meaningful difference when navigating life with bladder exstrophy. Whether you are newly diagnosed, raising a child with the condition, or living with bladder exstrophy as an adult, connecting with others can provide guidance, reassurance, and a sense of community.
The Association for the Bladder Exstrophy Community (A-BE-C) helps individuals and families find support through peer connections, local groups, and global resources.
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.
Join support groups where families and individuals share experiences, ask questions, and offer encouragement. These groups provide a space to connect with others who understand the journey.
Find local chapters and regional groups across the United States. These communities offer opportunities to meet others in person and build meaningful connections.
Explore support networks and resources available around the world. A-BE-C works to expand global access to care, education, and community support.
Get involved in advocacy efforts that raise awareness, support research, and improve care for individuals with bladder exstrophy.
If you are looking for a physician or specialist experienced in treating bladder exstrophy, A-BE-C can help guide you to trusted resources and providers.
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.