Association for the Bladder Exstrophy Community

10/28/2025

Feeling inspired in Barcelona 💙

I’m here at Hospital de la Santa Creu i Sant Pau, walking through one of the most beautiful hospitals in the world — a true blend of innovation, architecture, and healing. Built in the early 20th century, it’s a modernist masterpiece that continues to inspire care and compassion in every detail.

Just steps away is Fundació Puigvert, recently designated by A-BE-C as an International Center of Excellence for bladder exstrophy care, the only one of its kind in Europe. Seeing this connection between history and cutting-edge medicine in person is incredibly meaningful.

I’m so grateful to Dra Anna Bujons Tur for welcoming me and helping kick off our three-day meeting with support organizations from across Europe.

A special thank-you to La Dra Rocio Jimenez and Dr Juan Osorio, who made the tour unforgettable — sharing insights, history, and stories that reminded me how much dedication, expertise, and humanity shape patient care.

Standing in this space, surrounded by history and innovation, is a beautiful reminder of why our community’s work matters so deeply.

https://fundaciopuigvert.org/en/extrofia-vesical/

10/20/2025

A wonderful glimpse into what Youth Rally, Inc is all about!

10/15/2025

Big news for BE families 🌟
University Hospitals Rainbow Babies & Children’s Hospital is now home to a comprehensive Bladder Exstrophy Program, featuring advanced surgical care like the Kelly repair and a world-class team of experts.

Don’t miss the upcoming webinar + live Q&A with leaders in pediatric urology and advocacy — sharing how this program is transforming care for children worldwide.
REGISTER HERE: https://loom.ly/WtJP1-k

10/10/2025

Congratulations to The Hospital for Sick Children - SickKids in Toronto — officially recognized as an A-BE-C Center of Excellence in the treatment of bladder and cloacal exstrophy! SickKids’ multidisciplinary MAGIC Program is transforming care for children born with complex pelvic malformations — offering advanced surgical care, long-term follow-up, and life-changing support for families across Canada.

👏 Join us in celebrating this incredible milestone in exstrophy care and research!


From left to right: Noreen Goraya, Abby Varghese, Dr. Rodrigo Romao, Dr. Pippi Salle, Monping Chiang, Dr. Michael Chua, Dr. Michelle Gould

10/08/2025

We are proud to celebrate Dr. Joseph Borer, a world-renowned pediatric urologist and surgeon, as the recipient of this year’s Grady Award. This recognition reflects not only his extraordinary contributions to the field of urology, but also the compassion, dedication, and humility he brings to every patient and family he serves.

READ THE FULL STORY:

We are proud to celebrate Dr. Joseph Borer, a world-renowned pediatric urologist and surgeon, as the recipient of this year’s Richard W. Grady Humanitarian Award which was recently presented by Dr. Evalynn Vasquez at the A-BE-C Annual Exstrophy Conference. This recognition reflects not only his ex...

09/19/2025

👏👏👏 We are thrilled to announce that Fundació Puigvert in Barcelona, Spain has been designated as a World Center of Excellence in Bladder and Cloacal Exstrophy by A-BE-C!

🌍 This honor makes them the only accredited center in Europe and one of just 13 worldwide.

This recognition reflects nearly 50 years of dedication to supporting children and families living with bladder exstrophy, along with a deep commitment to comprehensive, multidisciplinary, and patient-centered care.

🤗 We extend our warmest congratulations to the incredible team at the Pediatric Urology Unit at Fundació Puigvert, led by Dr. Anna Bujons Tur, in collaboration with Hospital de la Santa Creu i Sant Pau. Your passion and expertise continue to make a difference for families around the world.

09/18/2025

2025 Conference Sessions Now Available!
Now you can watch 18 powerful conference sessions featuring medical experts, patients, and families sharing insights, advice, and real stories about living with bladder exstrophy.
✨ Inspiring panel discussions
✨ Social & medical challenges through every stage of life
✨ Stories of resilience and strength
Perfect for parents, patients, and professionals—learn at your own pace and revisit the topics that matter most.

💻Start watching now:

The 2025 Annual Exstrophy Conference was held in Boston, MA and proudly hosted in conjunction with Boston Children’s.

08/27/2025

Fifteen years ago, a baby boy named Solomon was born in Uganda with a condition no one could name.
There was no hospital equipped to help him, no doctor trained to recognize what was wrong. His parents, desperate to save him, made the long journey to a small missionary hospital in Kenya. There, Solomon was finally diagnosed with cloacal exstrophy—a rare and complex birth defect—and underwent life-saving surgery.
Since then, ABEC has grown its commitment to children with bladder exstrophy in Uganda. In 2019, we launched the ABEC Uganda Initiative, a team of passionate surgeons, nurses, and social workers who travel to Uganda each year. These volunteers pay their own way, leave their families behind, and work alongside Ugandan medical professionals to perform surgeries, provide training, and build sustainable local expertise.
In 2022, we partnered with Emergency Hospital in Entebbe—a modern pediatric surgical center offering free care to children. It's been a game-changer. But without transportation, many families simply cannot access the help that’s available.
Last year, we served more than 75 children. This year, we expect even more. We want every child to receive care—no matter where they live or what they can afford.

𝐈𝐟 𝐣𝐮𝐬𝐭 𝟏𝟎𝟎 𝐩𝐞𝐨𝐩𝐥𝐞 𝐠𝐢𝐯𝐞 $𝟏𝟎𝟎, 𝐞𝐯𝐞𝐫𝐲 𝐟𝐚𝐦𝐢𝐥𝐲 𝐰𝐡𝐨 𝐧𝐞𝐞𝐝𝐬 𝐭𝐡𝐢𝐬 𝐬𝐮𝐩𝐩𝐨𝐫𝐭 𝐰𝐢𝐥𝐥 𝐡𝐚𝐯𝐞 𝐢𝐭.
https://loom.ly/aIBiTvs