UroCare, Uganda, exstrophy, exstrophy hospital, exstrophy hospital Uganda

Expanding Our Reach

Over the past 3 years A-BE-C has helped facilitate surgeries for children with bladder exstrophy in Uganda, and trained Ugandan surgeons in India with the goal to ... more

Study to be Presented at Societies for Pediatric Urology Fall Meeting

You may remember a survey conducted earlier this year by Seattle Children's and A-BE-C regarding adult females with exstrophy and their long-term sexual, ... more
Rachel and Pamela Block

Help Us Meet the Challenge

This October, a team of America’s most experienced bladder exstrophy surgeons will be in Uganda for seven days to begin a five year initiative designed to treat these underserved children and adults and extend access to exstrophy surgery through the training of Ugandan surgeons. more
Marlo Eldridge, Pamela Artigas, AUA, bladder health

A-BE-C Makes an Impact

For the past 4 years, A-BE-C has been a part of a dedicated alliance advocating on behalf of our community. more
briten douglas, courage to shine, bladder exstrophy

Briten Douglas - Survivor and 2019 Courage to Shine Award Recipient

Briten Douglas is this year's recipient of the Courage to Shine award, setting an example with her perseverance and positive attitude throughout countless ... more
CHLA, bladder exstrophy, Bladder exstrophy conference

That's a Wrap! CHLA Creates a Memorable Experience at 2019 International Exstrophy Conference

The 2019 International Exstrophy Conference was a huge success, mostly due to the dedication and planning of the team at Children's Hospital Los Angeles. more

The 11th Annual Workshop in Ahmedabad, India Was a Resounding Success

The 11th annual workshop in Ahmedabad, India Was a Resounding Success thanks to a dedicated international collaboration of medical experts. For the 5th year, ... more

Third Annual 3-on-3 Basketball Tournament Surpasses Goal

The 3rd Annual BE Extraordinary 3-on-3 Basketball Tournament was once again a huge success. Hundreds of supporters, players and volunteers came out to raise money for this rare condition and support individuals with exstrophy. more

Center of Excellence Added to Distinguished List

A-BE-C is excited to announce the addition of  Ann & Robert H. Lurie Children’s Hospital of Chicago to its prestigious list of Centers of Excellence. Our Centers of Excellence program is the first to identify centers of care that report meeting the highest standards of treatment, including post-operative and long-term care for bladder and cloacal exstrophy. more
advisory board, ABEC, Dr. Evalynn Vasquez, Misty Blue Foster, Dr. Paul Merguerian

A-BE-C is Excited to Announce Newest Additions to Advisory Board

A-BE-C is excited to announce the addition of Dr. Evalynn Vasquez and Misty Blue Foster to its Advisory Board. In addition, Dr. Paul Merguerian was recently elected Board Chair, replacing Dr. Aseem Shukla. more
Faces of BE, bladder exstrophy

Faces of BE Photo Book Now Available!

Our Faces of BE book, a photo book showcasing individuals with exstrophy from around the world, is now available for purchase! In 2018, on a trip to Uganda ... more

Register Now for the 2019 Exstrophy Conference

2019 International Exstrophy Conference June 28-30, 2019 at Children's Hospital Los Angeles Los Angeles, California, USA Visit the conference page for more ... more

New! Animated video especially for children with bladder exstrophy

The Boy with the Tiny Belly Button is a wonderful animated film for all children born with bladder exstrophy. Available in English, as well as German, Gujara... more

Thank you for your generosity on #Giving Tuesday

Thank you! The generosity demonstrated by you, the A-BE-C community is overwhelming. A generous family matched all contributions to the campaign, helping us ... more

Premiering now! New documentary on bladder exstrophy in Uganda

The Uganda Initiative is launching as part of A-BE-C's work in global care for bladder exstrophy. See how--together--we're already making an impact in this special ... 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 ... more

The treatable condition of bladder exstrophy can still be a death sentence in Uganda

When a child in the US is born with bladder exstrophy, it can be both shocking and devastating. With ultrasound technology many parents have already been given ... 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

Bladder exstrophy in Uganda: Undying hope and a long journey for treatment

Ibriham was born with bladder exstrophy in northern Uganda. The condition was unfamiliar to local health workers. Though there was nowhere to turn for help, his ... more

Bladder exstrophy in Uganda: My story begins with Solomon

My story with exstrophy begins in a small country located in eastern Africa called Uganda. Uganda is commonly referred to as 'the Pearl of Africa' ... more

Seattle Children's and A-BE-C publish results of study surveying adult men with bladder exstrophy

Researchers at Seattle Children’s Hospital in collaboration with Association for the Bladder Exstrophy Community (A-BE-C) recently published results of a ... more

Living with bladder exstrophy in Uganda: Johnson's story continues

The quality of life for Ugandan bladder exstrophy patient Johnson (Ndyabagye) continues to improve since receiving his first surgery more than two years ... more
Rachel and Pamela Block

Living with bladder exstrophy in Uganda: Rachel's story

A team from A-BE-C, including Executive Director Pamela Block and Board Member Janet Gibson visited several bladder exstrophy patients living in Uganda in September ... more

Summer events strengthen exstrophy community and build support

Bladder exstrophy patients, families, and health care professionals gathered around the world to strengthen community and build support for each other at many ... more

“Super intern” Misty Blue Foster sees exstrophy as both patient and professional

As a bladder exstrophy patient and Master of Public Health candidate, Misty Blue Foster sees exstrophy from both sides of the equation: as an adult who knows ... more

8 U.S. hospitals are best-in-class for bladder exstrophy

The Association of 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. more

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

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.  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 Johnson finally gets a chance at healing

At seven, Johnson (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 ... 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

Annette's future with bladder exstrophy

When seventeen-month-old Annette was first born with bladder exstrophy, her mother assumed her condition was fatal. “I did not understand the whole situation,” ... 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