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.
Advancing care for bladder exstrophy requires ongoing research, collaboration, and shared knowledge.
This page highlights research initiatives, clinical articles, and program updates that contribute to improving outcomes and quality of life for individuals affected by bladder exstrophy.
Bladder exstrophy is a rare and complex condition, and continued research plays a critical role in:
A-BE-C works alongside clinicians, researchers, and global partners to support and share meaningful advancements in the field.
The following research and clinical initiatives reflect ongoing efforts to better understand and improve care for bladder exstrophy.
Research Study
Long-Term Outcomes in Adult Women with Bladder Exstrophy: Sexual, Reproductive, and Urinary Health
Research Study
Patient-Reported Outcomes in Bladder Exstrophy: Social Media Insights on Genital Appearance and Sexual Function
Research Study
Developing Surgical Training Programs for Complex Bladder Exstrophy Reconstruction
A-BE-C participates in and supports programs that advance research, education, and global care efforts.
These may include:
Program Update
Expanding the Future of Bladder Exstrophy Care in China
Research / Program Update
Global Surgical Collaboration Expands Access to Bladder Exstrophy Care in India
Many research studies are written in highly technical language.
A-BE-C is committed to helping make this information more accessible and understandable for patients and families.
By translating complex research into meaningful insights, we aim to empower individuals with knowledge and support informed decision-making.
Research and knowledge continue to evolve.
We encourage you to check back regularly for updates, new publications, and ongoing initiatives.
You can also stay informed by:
For those who would like to explore more in-depth clinical research, PubMed is a trusted database of peer-reviewed medical studies.
You can search topics such as:
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.