September 15, 2025
The 2025 Annual Exstrophy Conference was held in Boston, MA and proudly hosted in conjunction with Boston Children’s.
October 28, 2024
The 2024 Annual Exstrophy Conference was held in Milwaukee, WI and proudly hosted in conjunction with Children’s Wisconsin.
November 13, 2023
Realizing that care for the entire patient – beginning with appropriate surgical counseling and preparation, to psychosocial support and postoperative management – is key to successful outcomes, the sessions focused on the challenges patients and families face through a spectrum of discussions and provide tools to show that BE Doesn’t Limit ME!
July 6, 2021
We recently had the rare opportunity to get some words of wisdom from Australian, Tom Flood, who was born in 1930 with bladder exstrophy. In those days, very little was known about bladder exstrophy and no treatment options were available. His parents were told that Tom was not expected to survive and if he was not in pain, just to leave things as are. But Tom had other plans!
May 11, 2021
A-BE-C has teamed up with a group of physicians in a coordinated effort to send much needed oxygen concentrators to partner hospitals in major cities in India, to aid in their continued fight against Covid. India is experiencing the world’s worst outbreak, with 400,000 new cases each day.
October 24, 2020
Check out the video from our virtual back to school conference, where we discussed back to school concerns for BE kids and families, talk about Covid related issues, and provide tips for bathroom procedures.
July 17, 2020
Rosina comparte la historia de su hija, Fátima, también conocida como “Mily”, y su viaje con extrofia cloacal en el Children’s Hospital Los Angeles.
July 15, 2020
Rosina shares the story of her daughter, Fatima aka “Mily”, and their journey with cloacal exstrophy at Children’s Hospital Los Angeles.
June 20, 2020
Family shares their story and thankfulness for the A-BE-C community and the team at Seattle Children’s.
June 4, 2020
Couldn’t make it to the 2019 Conference? Sessions on coping with exstrophy now available!