May 2, 2019
2019 International Exstrophy Conference June 28-30, 2019 at Children’s Hospital Los Angeles Los Angeles, California, USA Visit the conference page for more information. Hosted by Children’s Hospital Los Angeles in partnership with Association for the Bladder Exstrophy Community (A-BE-C).
January 9, 2019
The Boy with the Tiny Belly Button is a wonderful animated film for all children born with bladder exstrophy.
July 6, 2018
The Association for the Bladder Exstrophy Community (A-BE-C) wants to shorten the time it takes families to find complete and effective care for their children born with bladder or cloacal exstrophy. That’s why A-BE-C is launching a Centers of Excellence program that recognizes best-in-class care. The first eight U.S. hospitals to report meeting its rigorous criteria […]
June 15, 2018
Tommy Ludlow, the young recipient of the this year’s Courage to Shine award is already inspiring others to turn challenge into opportunity. Tommy received the honor, in part, because he is by all available accounts the first bladder exstrophy patient to hike to Mt. Everest Base Camp. The 12-day journey to an elevation of 17,600 […]
May 24, 2018
A handful of teens with bladder exstrophy were recently recruited to try out a new kind of event: a camping trip with Dr. Bradly Kropp of Cook Children’s and the entire exstrophy team. Based on initial feedback, it’s destined to become an annual event. Anna Block, a 12-year camper on the trip took the time […]
May 10, 2018
Congratulations and big thank you to all involved in this year’s BE Extraordinary 3-on-3 Basketball Tournament! A special thanks to Brandi McSwain, one of the organizers who shares these highlights: A day of celebrating of kids with bladder exstrophy and raising money for a wonderful organization! What a great day celebrating our BE kids, raising community […]
April 25, 2018
A conference for the whole family! 6pm Thursday, June 7 – 4pm Saturday, June 9 “Whole Health” is the theme of the 2018 International Exstrophy Conference. You’ll find sessions and activities that foster emotional, mental and physical health at every age. Topics include nutrition, kidney health, sexual and reproductive functions, long-term management, malignancy risks in […]
April 25, 2018
With every bladder exstrophy patient there is a story of resilience and hope. A new chapter of young Ugandan Ndyabagye Johnson’s story has been written and we are delighted to to share it. You may recall Johnson was featured in a post in November of 2016 (Seven-year-old Ndyabagye finally gets a chance at healing). Back […]
March 15, 2018
Those who knew the late Dr. Richard W. Grady understand his unwavering commitment to children and families affected by bladder exstrophy. His global humanitarian work helped to elevate the standards of care for children born with this rare medical condition, and continues to improve the lives of families who have mostly been ignored and marginalized […]
January 22, 2018
Approximately 110 children with bladder exstrophy receive life-changing treatment and care at the international eight day event Safe, affordable and timely treatment can become a standard of care anywhere in the world for children born with bladder exstrophy. This is the message Pamela Block, Association for the Bladder Exstrophy Community’s (A-BE-C’s) executive director and others on […]