Association for the Bladder Exstrophy Community

12/22/2025

This September, A-BE-C returned to Uganda for our 6th annual surgical workshop, continuing our partnership with EMERGENCY Children’s Hospital in Entebbe and expanding access to care for families across East Africa.

Read the full story here:

This September, A-BE-C returned to Uganda for our 6th annual surgical workshop at EMERGENCY Children’s Hospital, providing expert surgical care and clinic services for more than 100 children and families from across East Africa.

12/19/2025

Our End of the Year Newsletter is out and we're looking back on a year of impact. Here's what we accomplished together in 2025: https://loom.ly/ga0KOvs

12/18/2025

Did you know there are over 50 videos on the BE app?
Did you know there is a BE app?!

We the BE app was developed by the exceptional team at OKC Kids Urology in partnership with A-BE-C, and is FREE and available to anyone!
Download the app today or visit the OKC Kids Urology YouTube page for a full list of videos:

YouTube channel for the Bladder Exstrophy app, We the BE. This is a Bladder Exstrophy app from OKC Kids Urology, a Bladder Exstrophy Center of Excellence.For...

12/04/2025

Johns Hopkins has been a national leader in bladder exstrophy care since 1975, when Robert Jeffs, who pioneered a staged approach to correcting exstrophy birth defects, joined the Children’s Center faculty as director of pediatric urology.

Today, Heather DiCarlo follows in the august footsteps of Jeffs and John Gearhart, director of pediatric urology from 1991 to 2025. DiCarlo, who joined the pediatric urology faculty in 2014 following a pediatric urology fellowship at the James Buchanan Brady Urological Institute, is now director of pediatric urology research and interim division director of pediatric urology.

Read the full story:

Johns Hopkins Children's Center has long been a national leader in treating this rare condition.

12/02/2025

Today is the day! Please donate to help our community continue to thrive. 🌳
https://www.bladderexstrophy.com/grow-the-roots/

12/02/2025

Every branch of our tree tells a story — of families finding support, doctors gaining training, and communities growing stronger.
Thanks to supporters like you - our roots run deep. Please donate to our Giving Tuesday campaign to help continue this vital work: https://www.bladderexstrophy.com/grow-the-roots/

12/01/2025

Hope grows here — in every branch, every story, every family.
But it all starts with strong roots.
Tomorrow is Giving Tuesday. Please give to the foundation that helps our community thrive. 🌳
https://www.bladderexstrophy.com/grow-the-roots/

11/30/2025

reminds us to celebrate progress and look forward.
Our Adult Provider Directory was a HUGE accomplishment, and the APAC team has big plans for making it even BETTER!
• Adding International providers to the directory
• Expanding to non-urology specialties (mental health, physical therapy, obstetrics)
• Improve access and continuity for adults with bladder exstrophy
Explore the directory: https://www.bladderexstrophy.com/adult-provider-directory/

11/29/2025

Remember to Register for Our Upcoming Workshop!

We’re all capable of compassion — including compassion for ourselves — but stress, anxiety, and life’s challenges can make it harder to access. This FREE 90-minute online workshop offers simple, mindfulness-based compassion practices you can use every day. Designed specifically for adults living with bladder or cloacal exstrophy or epispadias in the U.S. and Canada, this session is offered in partnership with A-BE-C.

DATE: Thursday, December 4th
TIME: 7:30 - 9:00PM Eastern
LOCATION: Virtual
REGISTER: https://forms.gle/aV8yukRsi7fLj19B8