13-year-old Tommy Ludlow receives Courage To Shine award

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 ... more

Teens give Dr. Kropp's first Camp BElive for bladder exstrophy a thumbs-up!

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 ... more

Second annual BE Extraordinary 3-on-3 Basketball Tournament a great success!

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 ... more

Registration is open for 2018 Exstrophy Conference in Cincinnati!

 A conference for the whole family! 6pm Thursday, June 7 - 4pm Saturday, June 9   "Whole Health" is the theme of the 2018 International ... more

Good News From Uganda!

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 ... more

Four exceptional physicians receive inaugural ‘Richard W. Grady Humanitarian Award’

Those who knew the late Dr. Richard W. Grady understand his unwavering commitment to children and families affected by bladder exstrophy. His global humanitar... more

More than 100 bladder exstrophy patients receive life-changing treatment from international team

Approximately 110 children with bladder exstrophy receive life-changing treatment and care at the international eight day event Safe, affordable and timely ... more

Urinary continence with bladder exstrophy

In order to achieve urinary continence in children with bladder exstrophy, it is important to understand the components that make a child dry, the challenges facing children with bladder exstrophy and the options available to bladder exstrophy patients. more

Bladder Cancer: Facts for bladder exstrophy patients

Understanding the facts about the risks of bladder cancer and how to reduce them are important topics for bladder exstrophy patients and their families. As part of ... more

Urinary tract infections (UTIs) in bladder exstrophy patients

People with bladder exstrophy are at greater risk for developing urinary tract infections. (UTIs). As part of Bladder Health Month, Dr. Ranjiv Mathews, Director of ... more

November is Bladder Health Awareness Month!

Get the Facts, Get Diagnosed and Take Control of Your Bladder Health! A-BE-C is a proud member of the Bladder Health Alliance,  a coalition of groups representing ... more

Become an A-BE-C subscriber!

A-BE-C's growing library of webinars and presentations on bladder exstrophy is now available through a new subscription program. Become a free or premium subscriber and gain instant access to videos especially for bladder exstrophy patients, parents and health care providers. more

The future of bladder exstrophy care in China

Pediatric urologist Dr. Zhou Huixia (周辉霞) cites gaps in bladder exstrophy care that exist across China, and her plans to designate People’s Liberation Army General Hospital, Beijing as a regional center of excellence for exstrophy surgery. more

A chance encounter leads to groundbreaking bladder exstrophy research

During a recent conversation with the Association for the Bladder Exstrophy Community, Dr. Wei Cheng (郑伟) recounted his chance encounter with bladder malformation in a mouse. This encounter ultimately led an international research team to identify the gene and mechanism that causes bladder exstrophy in humans. Dr. Cheng recalls this journey and the worldwide collaboration that made it possible.  more

Janet Gibson and Joseph B. Redman join A-BE-C's board of directors

We are pleased to announce that Janet Gibson and Joseph B. Redman have joined as the newest members of Association for the Bladder Exstrophy Community’s ... more
Dr. Richard W. Grady

The bladder exstrophy community says goodbye to Dr. Richard Grady

Dr. Richard Grady saw medicine as part science, part art. It was the cornerstone of his medical practice and his extensive humanitarian work. He embodied this ... more

Johns Hopkins seeking participants with bladder exstrophy for clinical trial

The pediatric urology team at Johns Hopkins is looking for bladder exstrophy patients to participate in a clinical trial. Participants must have a history of ... more

Meet the Texas Bladder Exstrophy Support Group

In 2015, a small group of three families came together to found the Texas Bladder Exstrophy Group. We are an online support group open to families in the ... more

Families in India learn post-surgical care for bladder exstrophy

Among the nearly 100 children who received checkups and medical procedures for bladder exstrophy at the operative workshop in India in January 2017, more than ... more

Nearly 100 exstrophy patients receive treatment in Ahmedabad, India

The 9th annual Operative Workshop on Exstrophy and Epispadias Complex got underway just after the first of the year in Ahmedabad, India. Nearly 100 exstrophy ... more

Seven-year-old Ndyabagye finally gets a chance at healing

At seven, Ndyabagye is old enough to understand that his body is different from those of his two brothers. He is old enough to understand that he cannot use the ... more

Dawna's "hobo-bags" a hit with young patients in India

The children receiving care in India are grateful for more than just treatment for their bladder exstrophy. They are also the proud owners of their very own "h... more

Mental health providers join A-BE-C's board of advisors

We are pleased to announce that three mental health providers have joined the advisory board of the Association for the Bladder Exstrophy Community (A-BE-C). ... more

Two bladder exstrophy patients receive life-changing surgeries in Qatar

This is an exciting time for A-BE-C's Global Care Initiative! Read the full announcement about the Annette's and Sabyr's surgeries at Sidra Medical and ... more

A-BE-C participates in bladder health roundtable

Executive Director Pamela Block was invited to represent the Association for the Bladder Exstrophy Community at the 2016 Bladder Health Alliance Roundtable in ... more

Sabyr's journey from Central Asia to a center of excellence for bladder exstrophy

Sabyr’s family hopes that one day their son will be able to sit up on his own and maybe, if he is lucky, he will even walk. But for now, the family is looking ... more

CompactCath offering free samples of new discrete catheter

For many bladder exstrophy patients, catheters are a source of frustration or embarrassment. The new CompactCath was created to replace the large, clunky design ... more

BE Informed about Catheters launches with Assessment and 8 Healthy Habits

Catheritization or "cathing" is a fact of life for many bladder exstrophy patients. The topic triggers many questions and concerns for parents and patients, ... more

Times of India features story of cross cultural support from young patient

"...a five-year-old abandoned Ugandan girl, born with her bladder outside her body, will undergo surgery with the help of funds collected by a seven-year-old by ... more

In the News - Young Patient Raising Money for Young Girl in Uganda

Seven-year-old bladder exstrophy patient Mick Hullinger is putting bladder exstrophy in the headlines thanks to his success in raising money to ... more

Major League Baseball & Bladder Exstrophy

MLB agent Joshua Kusnick courageously shares his journey living with bladder exstrophy in a profile by former Sports Illustrated reporter Joe Lemire in The Cauldr... more

Groundbreaking International Operative Workshop

A groundbreaking intensive workshop in the treatment of bladder exstrophy-epispadias complex for pediatric urologists and surgeons is taking place in Ahmedabad, ... more