Association for the Bladder Exstrophy Community

01/06/2026

Living with exstrophy or epispadias often means learning how to carry pain quietly. Our Compassion Cultivation Workshop offers a safe space to gently notice, name, and soften that experience — without pressure to “fix” anything.

If you missed our session in December, join us on January 22 to explore practical tools for self-compassion, mindfulness, and emotional resilience, alongside others who truly understand this journey.

Thursday, January 22 | 7:00–9:00 PM ET
FREE for adult members of A-BE-C and the Hypospadias & Epispadias Association

👉 Register now: https://loom.ly/Y-ANdLA

12/31/2025

As 2025 draws to a close, we reflect on a year defined by expanded global reach, strengthened resources, and meaningful community connections. From international collaboration to new tools for patients and families, the past year underscored the importance of empowering individuals through trusted information and supportive networks.

We extend heartfelt gratitude to the families, supporters, clinicians, and partners who make this work possible. With continued collaboration and shared commitment to ethical, evidence-based care, the community is poised for further growth and impact in the year ahead.

See how your support helped shape this year and where we’re headed next:

As 2025 draws to a close, the Association for the Bladder Exstrophy Community (A-BE-C) reflects on a year defined by expanded global reach, strengthened resources, and meaningful community connections. From international collaboration to new tools for patients and families, the past year underscored...

12/29/2025

During a recent trip to Spain, the Association for the Bladder Exstrophy Community (A-BE-C) participated in three meaningful engagements that together advanced global collaboration, clinical excellence, and patient-centered advocacy. These included a site visit to A-BE-C’s newest Bladder Exstrophy Center of Excellence at Fundació Puigvert in Barcelona, participation in the first-ever Global Congress on Advocacy and Community Collaboration, and continued partnership-building at the Asexve national conference in Madrid. Together, these moments reflect A-BE-C’s growing international impact and ongoing commitment to families affected by bladder exstrophy worldwide.

Read the full story here:

The Association for the Bladder Exstrophy Community (A-BE-C) recently joined international support organizations from around the world for the first-ever Global Congress on Advocacy and Community Collaboration—a landmark gathering dedicated to improving care, awareness, and connection for individu...

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/