Generated by All in One SEO v4.9.10, this is an llms.txt file, used by LLMs to index the site. # Association for the Bladder Exstrophy Community Supporting people affected by bladder exstrophy. ## Sitemaps - [XML Sitemap](https://www.bladderexstrophy.com/sitemap.xml): Contains all public & indexable URLs for this website. ## Blog - [Our Blog](https://www.bladderexstrophy.com/our-blog/) - [Bravery in the Face of the Unknown](https://www.bladderexstrophy.com/bravery-in-the-face-of-the-unknown/) - Like many of yours, our story is one of Acceptance of our son's diagnosis, Bravery in the face of the unknown, Empathy for one another, Courage instead of fear, and Faith in God's plan. - [Courage to Shine 2026: Thomas Vincent](https://www.bladderexstrophy.com/courage-to-shine-2026-thomas-vincent/) - At the 2026 A-BE-C Annual Conference in Los Angeles, Thomas was honored with the Courage to Shine Award in recognition of his remarkable journey and dedication to the bladder exstrophy community. In this inspiring reflection, he shares how bladder exstrophy shaped, but never limited, his life. From complex childhood surgeries to earning a PhD, traveling the world, hiking the Appalachian Trail, and becoming a research scientist and patient advocate, Thomas's story is a powerful reminder that a diagnosis does not define a person's future. His message offers hope, perspective, and encouragement for patients and families navigating every stage of the journey. - [It came without ribbons, it came without tags...](https://www.bladderexstrophy.com/love-saves-a-life/) - Janet Rankin shares her story of perseverance throughout her life with exstrophy and how the love of her husband saved her life. - [Historic Consensus: A New Era for Bladder Exstrophy Care](https://www.bladderexstrophy.com/historic-consensus-a-new-era-for-bladder-exstrophy-care/) - A-BE-C shares groundbreaking survey data from 133 bladder exstrophy families, sparking a historic global collaboration among leading surgeons focused on trust, transparency, and improving outcomes for every child. - [Honoring a Legacy: Dr. Paul Merguerian Receives the Richard Grady Humanitarian Award](https://www.bladderexstrophy.com/dr-paul-merguerian-receives-the-richard-grady-humanitarian-award/) - The International Bladder Exstrophy Collaborative (IBEC) gathered for its 18th annual workshop. Amidst the intense focus of world-class surgeons from across the globe, we took a moment to honor a man who has spent his career serving the most vulnerable: Dr. Paul Merguerian. - [A Year of Knowledge, Connection and Care](https://www.bladderexstrophy.com/a-year-of-knowledge-connection-and-care/) - As 2025 draws to a close, the Association for the Bladder Exstrophy Community (A-BE-C) reflects on a year defined by expanded global reach, strengthened resources, and meaningful community connections. From international collaboration to new tools for patients and families, the past year underscored the importance of empowering individuals through trusted information and supportive networks. - [Strengthening Global Connections for the Bladder Exstrophy Community](https://www.bladderexstrophy.com/strengthening-global-connections-for-the-bladder-exstrophy-community/) - The Association for the Bladder Exstrophy Community (A-BE-C) recently joined international support organizations from around the world for the first-ever Global Congress on Advocacy and Community Collaboration—a landmark gathering dedicated to improving care, awareness, and connection for individuals and families affected by bladder exstrophy. - [Uganda 2025: Building Access to Care Across East Africa](https://www.bladderexstrophy.com/uganda-2025-building-access-to-care-across-east-africa/) - This September, A-BE-C returned to Uganda for our 6th annual surgical workshop at EMERGENCY Children’s Hospital, providing expert surgical care and clinic services for more than 100 children and families from across East Africa. - [Introducing the Adult Exstrophy Provider Directory](https://www.bladderexstrophy.com/introducing-adult-provider-directory/) - We are thrilled to share some exciting news that has been months in the making. A-BE-C has officially launched our Adult Provider Directory—a first-of-its-kind resource designed to help adults with congenital urologic conditions connect with knowledgeable urologists who understand their lifelong care needs. This project represents the best kind of patient–clinician collaboration. Our Adult Patient - [Dr. Joseph Borer Honored with the 2025 Richard W. Grady Humanitarian Award](https://www.bladderexstrophy.com/dr-joseph-borer-2025-grady-award/) - 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 extraordinary contributions to the field of urology, but also the compassion, dedication, and humility he brings to every patient and family he serves. - [Now Available: 2025 International Exstrophy Conference Videos](https://www.bladderexstrophy.com/2025-international-exstrophy-conference-videos/) - The 2025 Annual Exstrophy Conference was held in Boston, MA and proudly hosted in conjunction with Boston Children’s. - [2025 Courage to Shine Award: George Hunt III](https://www.bladderexstrophy.com/2025-courage-to-shine-award/) - George Hunt III received the 2025 Courage to Shine award at the International Exstrophy Conference in Boston, MA. - [One Act of Kindness Can Change Everything](https://www.bladderexstrophy.com/one-act-of-kindness-can-change-everything/) - Since 2019, A-BE-C has deepened its commitment to children with bladder exstrophy in Uganda with the A-BE-C 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. - [A Father's Plea Leads To Worldwide Support](https://www.bladderexstrophy.com/a-fathers-plea-leads-to-worldwide-support/) - Four-year-old Khushbakht of Pakistan underwent her first successful bladder exstrophy repair and pelvic osteotomy in Doha, Qatar. Her journey to effective treatment was prompted by a heartfelt plea from her father to A-BE-C, which lead to worldwide support. - [Groundbreaking International Operative Workshop](https://www.bladderexstrophy.com/upcoming-events/) - A groundbreaking intensive workshop in the treatment of bladder exstrophy-epispadias complex for pediatric urologists and surgeons is taking place in Ahmedabad, Gujarat, India on January 16-18. Many of A-BE-C’s Medical Advisory Board members will be on-site faculty and A-BE-C's Executive Director, Pamela Block, will be on hand providing support to families. - [Bladder exstrophy in Uganda: My story begins with Solomon](https://www.bladderexstrophy.com/uganda-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' given its abundance of natural resources and lush climate. It is a country of approximately 40 million people with over half the population under the age of 15. It is also - [Raising Our Voices in Washington: A-BE-C at the AUA Advocacy Summit](https://www.bladderexstrophy.com/aua-advocacy-summit/) - A-BE-C proudly took part in the AUA Advocacy Summit in Washington, D.C.—a powerful event that brings together urologists, patient advocates, and policy makers to influence healthcare legislation and elevate the needs of the urologic patient community. - [Uniting the World's Brightest Minds: The 2025 IBEC Conference at CIVIL Hospital](https://www.bladderexstrophy.com/uniting-the-worlds-brightest-minds-the-2025-ibec-conference-at-civil-hospital/) - Imagine a room filled with 51 of the world’s top pediatric urology specialists, all gathered with a single mission—to transform the lives of children born with bladder exstrophy. That’s exactly what happened at CIVIL Hospital, as it proudly hosted the 2025 International Bladder Exstrophy Collaborative (IBEC) Conference! - [Mission Accomplished in Uganda](https://www.bladderexstrophy.com/mission-accomplished-in-uganda/) - This was our 5th trip to Uganda, and while every year leaves us feeling blessed, accomplished, exhausted, fulfilled, and yes, even stressed, this year was different. - [2023 International Exstrophy Conference Videos](https://www.bladderexstrophy.com/now-available-2023-international-exstrophy-conference-videos/) - 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! - [Now Available: 2024 International Exstrophy Conference Videos](https://www.bladderexstrophy.com/now-available-2024-international-exstrophy-conference-videos/) - The 2024 Annual Exstrophy Conference was held in Milwaukee, WI and proudly hosted in conjunction with Children’s Wisconsin. - [Building Community: Empowering Families Around the World](https://www.bladderexstrophy.com/building-community-empowering-families-around-the-world/) - We are committed to creating a self-sustaining bladder exstrophy community in Sub-Saharan Africa. On our upcoming Family Education Day, over 50 families from Uganda, South Sudan, and Burundi will come together with our Global Care team for a day focused on education, empowerment, and connection. - [Rachel Althizer Receives the 2024 Courage to Shine Award](https://www.bladderexstrophy.com/rachel-althizer-receives-the-2024-courage-to-shine-award/) - Rachel Althizer, 32, received the 2024 Courage to Shine award at the International Conference in Milwaukee, WI. - [Dr. Joao Luiz Pippi Salle Receives 2024 Humanitarian Award](https://www.bladderexstrophy.com/dr-joao-luiz-pippi-salle-receives-2024-humanitarian-award/) - A-BE-C recently presented its Richard W. Grady Humanitarian Award to Dr. Joao Luiz Pippi Salle, Professor of Urology, SickKids Hospital and Co-Director of the Center for Pelvic Reconstruction. - [Back to Uganda](https://www.bladderexstrophy.com/back-to-uganda/) - The A-Be-C Uganda initiative continues to grow with each passing year. This October, A-BE-C was represented by a dedicated team of surgeons, nurses, a social worker, and patient advocates. - [The US-India Bladder Exstrophy Collaborative](https://www.bladderexstrophy.com/the-us-india-bladder-exstrophy-collaborative/) - Since 2009, a team of surgeons, anesthesiologists, social workers, and other healthcare providers from hospitals in India and the U.S. have worked together to help more children in Asia and Africa receive the complex surgery necessary to address bladder exstrophy. - [Dr. William Reiner Receives 2023 Humanitarian Award](https://www.bladderexstrophy.com/dr-reiner-humanitarian-award/) - A-BE-C recently presented its Richard W. Grady Humanitarian Award to Dr. William Reiner, Child and Adolescent Psychiatry, Urology. Dr Reiner, a world-renowned Child and Adolescent Psychiatrist, spent his career focused on the psychological aspects of bladder exstrophy. - [A Fierce Advocate](https://www.bladderexstrophy.com/dr-boateng-nimako/) - The first time you meet Dr. Boateng Nimako, you can tell he’s a special individual. It’s not only his calming voice or infectious smile, but also the way he fiercely advocates for his patients. - [Resilience: Overcoming Obstacles to Impact Lives Around the Globe](https://www.bladderexstrophy.com/exstrophy-journey-around-the-world/) - Anna Artigas, daughter of Executive Director Pamela Artigas, is traveling with A-BE-C for the 2023 International Exstrophy Workshop in Uganda as part of a service project to provide support to teens with exstrophy. - [Worth the Wait](https://www.bladderexstrophy.com/uganda-2023recap/) - After two years of delays due to Covid, and then another delay due to an Ebola outbreak in Uganda, the US team was finally able to hold our second workshop at Uro Care in Kampala. Our committed team treated, connected with and supported 23 families from all over Uganda. - [A One-of-a-kind, Worldwide Collaboration](https://www.bladderexstrophy.com/india-2023recap/) - A-BE-C is so proud to be a part of the annual Bladder Exstrophy workshop which celebrated its 15th year in January!!! After two days of extensive discussion and five days of complex surgeries, I can’t thank Civil Hospital enough for their ongoing commitment to our beautiful children and families living with bladder exstrophy. - [An Exstrophy Journey to India](https://www.bladderexstrophy.com/exstrophy-journy-to-india/) - Rachel Althizer is traveling with A-BE-C for the 2023 International Exstrophy Workshop in Ahmedabad, India, as a social worker to assist children and families with exstrophy as they prepare for surgery. - [Dr. John Gearhart Receives 2022 Humanitarian Award](https://www.bladderexstrophy.com/dr-john-gearhart-receives-2022-humanitarian-award/) - A-BE-C recently presented its Richard W. Grady Humanitarian Award to John P. Gearhart, M.D., Johns Hopkins Professor of Pediatrics and Urology. The distinguished award was presented during the 2022 International Exstrophy Conference in Baltimore, MD. - [Remembering Dr. Canning](https://www.bladderexstrophy.com/remembering-dr-canning/) - Dr. Canning gave of himself completely in doing his utmost to improve every child's life that he touched, to the best of his ability. He always put his patients' care, safety and quality of life first in every conversation and plan of care. The entire BE community will miss his tremendous passion, kindness, availability and great skill. - [Another Chapter in Johnson’s Story](https://www.bladderexstrophy.com/another-chapter-in-johnsons-story/) - Johnson, now a grown up boy, looks so healthy and energetic. He told me, “he feels pretty fine.” He has not had any health complications for some time now. Johnson is still in school and progressing well, currently in primary three. - [A Life of Lonliness: Mainouna's Story](https://www.bladderexstrophy.com/mainounas-story/) - “Imagine the feeling of sleeping on a wet bed every night and to wake up very early to clean it and put it on the roof to dry before people wake up.” - [Missing a Piece of the Puzzle: Khadidja's Story](https://www.bladderexstrophy.com/khadidjas-story/) - Khadidja’s childhood memories are mostly of struggle. She often leaked urine and kids her age always made fun of her. They criticized her for how she walked, and how her thighs never looked as "normal" as theirs. - [Nearly 100 exstrophy patients receive treatment in Ahmedabad, India](https://www.bladderexstrophy.com/exstrophy-patients-receiving-treatment-in-ahmedabad/) - 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 patients received treatment from an international team of experts. Patients and their families made journeys from all over India to the Main Civil Hospital for surgery, check-ups and other procedures. Several other doctors - [8 U.S. hospitals are best-in-class for bladder exstrophy](https://www.bladderexstrophy.com/8-hospitals-best-in-class-bladder-exstrophy/) - 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 - [Mental health providers join A-BE-C's board of advisors](https://www.bladderexstrophy.com/mental-health-providers-join-a-be-cs-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). All three specialize in pediatric urology and are active in the bladder and cloacal exstrophy community. Many of the world’s leading medical experts in the treatment of bladder exstrophy have long - [Poster Presentation: The Uganda Exstrophy-Epispadias Complex Initiative](https://www.bladderexstrophy.com/poster-presentation-the-uganda-exstrophy-epispadias-complex-initiative/) - Developing a Program for Transference of Complex Surgical Reconstructive Skills - [Seven-year-old Johnson finally gets a chance at healing](https://www.bladderexstrophy.com/seven-year-old-ndyabagye-finally-get-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 use the toilet like other children his age. And he realizes that he will not find relief from his constant physical pain until he receives surgery - [Johnson's Story](https://www.bladderexstrophy.com/johnsons-story/) - Sadly, the beginning of Johnson’s story is one of many – there are hundreds of children just like him that are feeling hopeless and helpless. Who are suffering without access to care and treatment. And for every child like Johnson, there are parents feeling the anguish of not being able to properly care for their - [Living with bladder exstrophy in Uganda: Johnson's story continues](https://www.bladderexstrophy.com/uganda-johnson/) - The quality of life for Ugandan bladder exstrophy patient Johnson (Ndyabagye) continues to improve since receiving his first surgery more than two years ago. You may remember first reading about him in 2016 as an untreated bladder exstrophy patient in constant physical pain. After two successful surgeries, last year's "good news" post reported Johnson was no - [Treasure's Story Continues](https://www.bladderexstrophy.com/treasures-story-continues/) - Treasure is now a joyful three-and-a-half year old and currently has no major health challenges. Although she has not been able to be seen in person in the clinic, A-BE-C has been able to care for her remotely through telemedicine. - [Keep On Keeping On](https://www.bladderexstrophy.com/keep-on-keeping-on/) - 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! - [Premiering now! New documentary on bladder exstrophy in Uganda](https://www.bladderexstrophy.com/uganda-documentary/) - 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 preview of our new extraordinary documentary. - [Alves to India](https://www.bladderexstrophy.com/alves-to-india/) - Late in the day at a makeshift ‘medical mission’ clinic in the Bahamas as the doors were closing for the day, a family hesitantly knocked on the door. Judging by the looks on their faces, the volunteer nurses knew they were desperate for help. Avles, an adorable five year old boy stood before them - they could smell him before they met him. Alves’ father, Lucner, out of desperation and faith asked if they would see his child, not really expecting they could do anything. - [Bladders Matter!](https://www.bladderexstrophy.com/bladders-matter/) - Dr. Bradley Kropp, of OKC Kids Urology, talks about how the bladder works and why it's important for bladder exstrophy. - [Teens give Dr. Kropp's first Camp BElieve for bladder exstrophy a thumbs-up!](https://www.bladderexstrophy.com/camp-be-live-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 - [A-BE-C Partners with Physician Group to Raise over $500,000 to Aid India in Their Fight Against Covid](https://www.bladderexstrophy.com/a-be-c-partners-with-physician-group-to-raise-over-500000-to-aid-india-in-their-fight-against-covid/) - 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. - [Bladder Cancer: Facts for bladder exstrophy patients](https://www.bladderexstrophy.com/bladder-cancer-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 Bladder Health Month, Dr. John V. Kryger talked with A-BE-C's Pamela Artigas to help clarify the facts and provide recommendations to the A-BE-C community. - [Our Global Care Initiative](https://www.bladderexstrophy.com/our-global-care-initiative/) - A-BE-C has committed to a five year initiative designed to treat under-served children and adults in resource poor countries and extend access to surgical interventions and other treatments through the training of physicians in Uganda. - [2020 Back to School Virtual Conference!](https://www.bladderexstrophy.com/back-to-school-virtual-conference/) - 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. - [Failed Primary Exstrophy Closure Webinar Recording](https://www.bladderexstrophy.com/a-be-c-failed-exstrophy-closure/) - Dr. Gearhart provides details about what makes a successful primary exstrophy closure, why some closures fail, how to prevent failed closures, the types of failures and the treatment of failed closures. - [El milagro perfecto de Rosina](https://www.bladderexstrophy.com/el-milagro-perfecto-de-rosina/) - 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. - [Re-Released! 2016 International Exstrophy Conference Videos](https://www.bladderexstrophy.com/2016-exstrophy-conference/) - Sessions from the 2016 conference focused on fertility and sexual health for those with bladder exstrophy, research updates, transitional care, how to advocate for school-age children and more. - [The 11th Annual Workshop in Ahmedabad, India Was a Resounding Success](https://www.bladderexstrophy.com/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, A-BE-C was among the visiting team of 27 pediatric surgeons, nephrologists, anesthesiologists, nurses, social workers, and researchers united in the shared passion for the treating the humbling condition of bladder exstrophy. A-BE-C - [Rosina's Perfect Miracle](https://www.bladderexstrophy.com/miracle/) - Rosina shares the story of her daughter, Fatima aka “Mily”, and their journey with cloacal exstrophy at Children's Hospital Los Angeles. - [CHOP - Thoughts on COVID-19 Crisis](https://www.bladderexstrophy.com/chop-thoughts-on-covid-19-crisis/) - We have been amazed at our ability as humans to pivot as our reality changed. We have learned about and adapted to this “new normal.” The outpouring of volunteerism that I have seen on our team has been impressive. - [A-BE-C is Excited to Announce Newest Additions to Advisory Board](https://www.bladderexstrophy.com/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. Our board helps to shape and guide the strategy of the organization and is vital to the success of our mission: To make the highest standards of treatment, care and support within reach of all - [2019 Conference Videos Now Available!](https://www.bladderexstrophy.com/a-be-c-2019-international-bladder-exstrophy-conference/) - Couldn't make it to the 2019 Conference? Sessions on coping with exstrophy now available! - [Webinar: Exploring the Gene Mutation Discovery](https://www.bladderexstrophy.com/a-be-c-exploring-gene-mutation-discovery/) - Dr. Heiko Reutter is a world renown researcher in the field of pediatrics and human genetics. In this webinar Dr. Reutter will share his research and insights on the discovery of a genetic mutation associated with bladder exstrophy. - [Webinar: Long Term Management of Bladder Exstrophy](https://www.bladderexstrophy.com/webinar-long-term-management-of-bladder-exstrophy/) - Dr. Paul Merguerian discusses the management and long term outcomes of children with bladder exstrophy and epispadias, the initial management of pelvic osteotomies, and the goals of long-term management. - [A-BE-C Elects Dr. Paul Merguerian as Advisory Board Chair](https://www.bladderexstrophy.com/a-be-c-elects-dr-paul-merguerian-as-advisory-board-chair/) - A-BE-C recently elected Dr. Paul Merguerian to a two year term as Advisory Board Chair. Our board helps to shape and guide the strategy of the organization and is vital to the success of our mission: To make the highest standards of treatment, care and support within reach of all people affected by bladder exstrophy. - [ARTICLE: Patient-reported outcomes in adult females with bladder exstrophy](https://www.bladderexstrophy.com/patient-reported-outcomes-in-adult-females-with-bladder-exstrophy/) - An article based on a survey conducted in 2019 by Seattle Children's and A-BE-C regarding adult females with exstrophy and their long-term sexual, reproductive, and urinary outcomes has been published. - [Family Finds Hope and Support at Seattle Children's](https://www.bladderexstrophy.com/family-finds-hope-and-support-at-seattle-childrens/) - Family shares their story and thankfulness for the A-BE-C community and the team at Seattle Children's. - [Comedian Paul Kerensa Shares Exstrophy Experience](https://www.bladderexstrophy.com/a-be-c-paul-kerensa-shares-exstrophy-experience/) - The very entertaining Paul Kerensa recently hosted a funny, relatable, and encouraging show about his journey with exstrophy. The event was live on Facebook, but you can still view it here. Suitable for all ages! - [Kids with Exstrophy Share Their Wisdom](https://www.bladderexstrophy.com/kids-with-exstrophy/) - At the 2016 International Exstrophy Conference, several young attendees shared their insight and expertise about living with bladder exstrophy. Take a moment to enjoy and absorb their valuable words and wisdom! - [Re-Released! 2015 International Exstrophy Conference Videos](https://www.bladderexstrophy.com/re-released-2015-international-exstrophy-conference-videos/) - Sessions from the 2015 conference focused on the medical, social, emotional, and practical aspects of living with exstrophy. - [Animated video especially for children with bladder exstrophy](https://www.bladderexstrophy.com/video-belly-button/) - The Boy with the Tiny Belly Button is a wonderful animated film for all children born with bladder exstrophy. - [Webinar recording - Preparing your Child for Surgery](https://www.bladderexstrophy.com/a-be-c-preparing-child-surgery/) - In this two-part webinar, Dr. Marlo Eldridge shares her deep experience and expertise and offers specific tips and insights to parents and providers. - [How to Talk About Bladder Exstrophy - Free Webinar Recording](https://www.bladderexstrophy.com/how-to-talk-about-exstrophy/) - While advances have been made in surgical approaches to the management of exstrophy, less is known about the psychosocial development and adjustment particularly as children and their family’s progress to childhood and adolescence. One of key issues that many parents struggle with is how to talk to others about this condition. What happens when my - [Urinary continence with bladder exstrophy](https://www.bladderexstrophy.com/urinary-continence/) - Dr. Tony Khoury Chief of Pediatric Urology at both Children's Hospital of Orange County (CHOC) Children's Urology Center and the University of California-Irvine Medical Center, provides this helpful overview of the factors involved in urinary continence in children with bladder exstrophy. "100 percent dryness is critical and achievable in every one of our bladder exstrophy patients." - [Urinary tract infections (UTIs) in bladder exstrophy patients](https://www.bladderexstrophy.com/utis-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 Pediatric Urology and Professor at SIU Medicine took a break from surgery to share some insights about UTIs especially for bladder exstrophy patients and their parents. Download the accompanying handout. - [Webinar recording - Overview of Bladder Exstrophy](https://www.bladderexstrophy.com/overview/) - Dr. William Reiner, Child and Adolescent Psychiatry, Urology at OKC Kids Urology, provides an excellent overview of bladder exstrophy in this webinar. You'll also hear the co-founders and executive director of A-BE-C share the purpose, history and new developments at A-BE-C. Don't miss the Q&A section, which begins after the 35 minute presentation. This recording - [Persis Makes it Home Safely Amidst Pandemic](https://www.bladderexstrophy.com/persis-india-a-be-c/) - A-BE-C traveled to Ahmedabad, India for the 12th Annual Operative Workshop on BE. Here is an update on Persis who received closure surgery at the workshop. - [Help Us Meet the Challenge](https://www.bladderexstrophy.com/help-us-meet-the-challenge/) - Your gift today will allow us to invest in our Uganda Initiative, which means more lives healed, more lives restored, more lives saved. More children reaching their greatest life purpose and potential. - [8 Healthy Cathing Habits](https://www.bladderexstrophy.com/8-healthy-cathing-habits/) - 8 Healthy Cathing Habits Download the 8 Healthy Cathing Habits poster! It’s a free PDF file that is ready to print. Catheterization or “cathing” is a fact of life for many bladder exstrophy patients. These eight healthy cathing habits help patients reduce the risk of urinary tract infections (UTIs) and are important in maintaining - [Expanding Our Reach](https://www.bladderexstrophy.com/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 work with Uro Care Hospital to build a medical facility where children can both undergo surgeries and receive follow up treatments. Making an Impact in Uganda The success - [BE Informed about Catheters launches with Assessment and 8 Healthy Habits](https://www.bladderexstrophy.com/be-informed-about-catheters/) - Catheritization or "cathing" is a fact of life for many bladder exstrophy patients. The topic triggers many questions and concerns for parents and patients, which is why A-BE-C will be featuring it in the coming weeks. To start, you can take a quick Cathether Assessment and find out about some of the recent advancements in - [Study to be Presented at Societies for Pediatric Urology Fall Meeting](https://www.bladderexstrophy.com/surveypresentation/) - 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, reproductive, and urinary outcomes. We received an overwhelming response thanks to our amazing BE community. The research team at Seattle Children’s has been focused on adding the patient perspective to - [Center of Excellence Added to Distinguished List](https://www.bladderexstrophy.com/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. Association for the Bladder Exstrophy Community (A- BE-C) is pleased to add Ann & Robert H. Lurie Children’s Hospital of Chicago to its prestigious list of Centers of Excellence. A-BE-C's Centers - [Good News From Uganda!](https://www.bladderexstrophy.com/good-news-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 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 - [In the News - Young Patient Raising Money for Young Girl in Uganda](https://www.bladderexstrophy.com/contribute-to-micks-surgery-fund/) - [lead]You can help bladder exstrophy patient Mick Hullinger fund surgeries for other children around the world with bladder exstrophy by making a contribution.[/lead] Seven-year-old bladder exstrophy patient Mick Hullinger is putting bladder exstrophy in the headlines thanks to his success in raising money to fund bladder exstrophy repair surgery for other children. Watch the Story on Seattle's - [Living with bladder exstrophy in Uganda: Rachel's story](https://www.bladderexstrophy.com/uganda-rachel/) - 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 2018. Pamela Block shares the following reflections. It takes some time to reflect on the enormity of the challenges of life with bladder exstrophy in Uganda. The stories are hard to - [Bladder exstrophy in Uganda: Undying hope and a long journey for treatment](https://www.bladderexstrophy.com/ibriham/) - 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 father never gave up hope on treatment for his son. At great sacrifice, they traveled to hospitals in Uganda, Sudan, and the Congo looking for help before a connection - [The treatable condition of bladder exstrophy can still be a death sentence in Uganda](https://www.bladderexstrophy.com/uganda-bladder-exstrophy/) - 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 the bladder exstrophy diagnosis before birth, but it is still overwhelming for parents to see the defect and be hurdled into a world of surgeries, information and follow - [Times of India features story of cross cultural support from young patient](https://www.bladderexstrophy.com/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 from the USA who felt the same pain as he was too suffering with the same condition." US kid raises money for Uganda girl's surgery in state, The Times of India, - [Dawna's "hobo-bags" a hit with young patients in India](https://www.bladderexstrophy.com/a-be-c-volunteer-in-the-news/) - 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 "hobo-bags." Each has been thoughtfully made and filled by A-BE-C super-volunteer Dawna Boudot, a 17-year old from Ohio. "The hobo bags are a huge hit in the ward today," reports Pamela Block, A-BE-C's executive - [Families in India learn post-surgical care for bladder exstrophy](https://www.bladderexstrophy.com/families-learning-post-surgical-bladder-care-bladder-exstrophy-support-recovery/) - 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 a dozen were undergoing complex corrective surgeries. For those children and their families, surgery marks the beginning of a lengthy post-surgery recovery process. Parents learning wound and pin care This year, - [A-BE-C Makes an Impact](https://www.bladderexstrophy.com/a-be-c-makes-an-impact/) - A-BE-C Advocates for Bladder Exstrophy Awareness and Education The Urology Care Foundation leads a coalition of 30 patient and physician advocacy organizations that work to advance bladder health awareness and education. For the past 4 years, A-BE-C has been a part of this dedicated alliance advocating on behalf of our community. In 2016, the Bladder Health Alliance was - [Briten Douglas - Survivor and 2019 Courage to Shine Award Recipient](https://www.bladderexstrophy.com/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 years of pain and adversity. Briten was presented with the award at the 2019 International Exstrophy Conference in Los Angeles on June 29 by Tom Exler, founder and chairman of Courage to Shine. Thank - [That's a Wrap! CHLA Creates a Memorable Experience at 2019 International Exstrophy Conference](https://www.bladderexstrophy.com/2019_conferencerecap/) - 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. Our heartfelt thanks goes out to the CHLA team for orchestrating a well organized, insightful event. It was a great experience for all attendees! Highlights of the weekend Highlights included sessions - [Third Annual 3-on-3 Basketball Tournament Surpasses Goal](https://www.bladderexstrophy.com/third-annual-3-on-3-basketball-tournament/) - Participants and supporters at the 3-on-3 Basketball Tournament hosted by the Texas Bladder Exstrophy Group 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. Cook Children's Pediatric Urology has A-Peel! - [Faces of BE Photo Book Now Available!](https://www.bladderexstrophy.com/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 to serve children and families with exstrophy, Executive Director Pamela (Block) Artigas, realized that many of the children she met had never seen another person with exstrophy. - [Register Now for the 2019 Exstrophy Conference](https://www.bladderexstrophy.com/save-the-dates-2019-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 information. Hosted by Children's Hospital Los Angeles in partnership with Association for the Bladder Exstrophy Community (A-BE-C). - [Behind Children’s Ways Participation.](https://www.bladderexstrophy.com/behind-childrens-ways-participation/) - Lorem Ipsum is simply dummy text of the printing and typesetting industry. Lorem Ipsum has been the industry’s standard dummy text ever since the 1500s, when an unknown printer took a galley of type and scrambled it to make a type specimen book... - [Thank you for making Giving Tuesday an overwhelming success for bladder exstrophy](https://www.bladderexstrophy.com/giving-tuesday-thanks/) - Thank you! The generosity demonstrated by you, the A-BE-C community is overwhelming. You made #GivingTuesday count for bladder exstrophy in a big way! A generous family matched all contributions to the campaign, pushing our total over $25,000! And donations continue to come in though Facebook and the website. (It's not too late to add your - [Seattle Children's and A-BE-C publish results of study surveying adult men with bladder exstrophy](https://www.bladderexstrophy.com/adult-men-survey/) - Researchers at Seattle Children’s Hospital in collaboration with Association for the Bladder Exstrophy Community (A-BE-C) recently published results of a study surveying adult male patients about genital appearance and erectile function. It is the first research study to focus on genital perception in adult men with bladder exstrophy. The results are available in the Journal - [“Super intern” Misty Blue Foster sees exstrophy as both patient and professional](https://www.bladderexstrophy.com/super-intern-misty-blue-foster/) - 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 firsthand the daily struggles and triumphs of living with the rare disease, and as a professional trained to evaluate and improve systems of care. For her master’s program - [13-year-old Tommy Ludlow receives Courage To Shine award](https://www.bladderexstrophy.com/tommy-ludlow/) - 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 - [Second annual BE Extraordinary 3-on-3 Basketball Tournament a great success!](https://www.bladderexstrophy.com/second-beextraordinary-tournament/) - 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 - [Registration is open for 2018 Exstrophy Conference in Cincinnati!](https://www.bladderexstrophy.com/conference-3/) - 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 - [Four exceptional physicians receive inaugural ‘Richard W. Grady Humanitarian Award’](https://www.bladderexstrophy.com/inaugural-richard-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 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 - [More than 100 bladder exstrophy patients receive life-changing treatment from international team](https://www.bladderexstrophy.com/10th-exstrophy-workshop/) - 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 - [November is Bladder Health Awareness Month!](https://www.bladderexstrophy.com/bhm-november/) - 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 physicians, patients and veterans that have teamed up to support Bladder Health Month. “It’s important for us to normalize the conversation about bladder health conditions." Each day, millions - [Become an A-BE-C subscriber!](https://www.bladderexstrophy.com/become-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 Basic (free) or Premium Subscriber and gain instant access to videos especially for bladder exstrophy patients, parents and health care providers. All subscribers will be the first to be notified of upcoming webinars, new research - [The future of bladder exstrophy care in China](https://www.bladderexstrophy.com/bladder-exstrophy-china/) - Laparoscopic pediatric urologist Dr. Zhou Huixia (周辉霞) highlights 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. (Left) Dr. Zhou Huixia with Dr. Rakesh Joshi at the Operative Workshop on Exstrophy in Ahmedabad, India (Right) - [A chance encounter leads to groundbreaking bladder exstrophy research](https://www.bladderexstrophy.com/groundbreaking-bladder-exstrophy-research/) - Professor Wei Cheng recalls the path that led to the discovery of the gene and mechanism responsible for bladder exstrophy in humans 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 - [Janet Gibson and Joseph B. Redman join A-BE-C's board of directors](https://www.bladderexstrophy.com/janet-gibson-joseph-b-redman-join-cs-board-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 board of directors. Before joining the board, both were already committed volunteers with a passion for A-BE-C’s mission. Janet Gibson has long been an advocate for vulnerable children, including time - [The bladder exstrophy community says goodbye to Dr. Richard Grady](https://www.bladderexstrophy.com/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 philosophy. On April 25th, after a three-year battle with brain cancer, Dr. Grady passed away. With his passing, the bladder exstrophy community lost a tireless champion and a medical visionary. - [Johns Hopkins seeking participants with bladder exstrophy for clinical trial](https://www.bladderexstrophy.com/bladder-extrophy-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 bladder exstrophy closure and failed bladder neck reconstruction. John P. Gearhart M.D. and Heather N. McCaffrey Di Carlo, M.D. are leading the study. They have reached out to A-BE-C to - [Meet the Texas Bladder Exstrophy Support Group](https://www.bladderexstrophy.com/texas-bladder-exstrophy-support/) - 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 Texas/Oklahoma area that are affected by Bladder Exstrophy. In the past year and a half, we have grown to a group of over 15 families that feel - [Two bladder exstrophy patients receive life-changing surgeries in Qatar](https://www.bladderexstrophy.com/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 Research Center in Qatar that are a result of an international collaboration between A-BE-C and Qatar Foundation for Education, Science and Development. Both surgeries were performed by Dr. Pippi Salle, with the support of - [A-BE-C participates in bladder health roundtable](https://www.bladderexstrophy.com/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 Lithium, Maryland. The October 6th event was hosted by the Urology Care Foundation. It brought together more than 25 patient advocate organizations and physicians, united by a common goal of promoting bladder - [Sabyr's journey from Central Asia to a center of excellence for bladder exstrophy](https://www.bladderexstrophy.com/sabyr2/) - 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 forward to October 19th, when the 19 month old from Central Asia will travel to Sidra Medical and Research Center and Hamad - [Annette's future with bladder exstrophy](https://www.bladderexstrophy.com/annettes-journey-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,” she says. “I had not seen or heard about this condition before, so I thought I would lose my baby.” It was not until Annette was transferred from her local hospital in - [Major League Baseball & Bladder Exstrophy](https://www.bladderexstrophy.com/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 Cauldren. "For many years I skirted the issue, especially when parents of children dealing with BE would ask me what their children's lives would be like," says Joshua in a post ## Pages - [What is Bladder Exstrophy?](https://www.bladderexstrophy.com/) - Set sail for big wins with our partner Tortuga Casino! Enjoy a pirate-themed gaming adventure featuring exciting slots, table games, and generous bonuses for all players. The perfect place for treasure hunters! Experience retro glamour at our partner PinUp Casino! This stylish platform offers classic slots, table games, and crash games with generous bonuses and - [Contact](https://www.bladderexstrophy.com/contact/) - Get In Touch Vero Beach, FL 32963 First Last Email* Enter Email Confirm Email PhoneMessageAgree to Terms*I agree to the Association for the Bladder Exstrophy Community (A-BE-C) privacy policy. Please type the words "I agree" in the box below. Seeking Medical Treatment?If you are looking for assistance finding medical treatment, please complete the form below. - [BE Dry](https://www.bladderexstrophy.com/be-dry/) - School aged children with BE have to wear diapers, or worse, not attend school at all. BE-DRY®: Improving Continence, Dignity, and Education for Children with Bladder Exstrophy BE-DRY® is a first-of-its-kind, reusable continence underwear program developed and led by the Association for the Bladder Exstrophy Community (A-BE-C). The program was created to address the daily - [2023 Annual Conference](https://www.bladderexstrophy.com/2023-annual-conference/) - Proudly hosted in conjunction with Seattle Children’s Welcome Party & Registration Friday, July 21 | 6:00-8:30PM Washington Athletic Club 1325 Sixth Avenue Seattle, WA 98101 Details TBD Conference Sessions Saturday, July 22 | 8:00AM – 5:00PM Washington Athletic Club CHECK OUT THE AGENDA! Cost Individual: $55 ($50 before April 30th) Families: $85 ($75 before April - [Centers of Excellence](https://www.bladderexstrophy.com/centers-excellence/) - Our program is the first to recognize health systems that report meeting the highest standards of treatment for the rare conditions of bladder and cloacal exstrophy, including post-operative and long-term care. In addition, to guide families affected by bladder exstrophy and to ensure that all patients receive honest, evidence-based, and ethical care from pediatric urologists - [India](https://www.bladderexstrophy.com/india/) - Thank You for Supporting India’s Hospitals in Their Fight Against Covid Thanks to the generosity of our community, we were able to send several shipments of oxygen concentrators to many locations in India. Our last shipment has been sent and therefore we are no longer accepting donations for concentrators. Stay tuned for final updates and - [2026 Annual Conference](https://www.bladderexstrophy.com/annual-conference/) - The 2026 Conference is proudly hosted in conjunction with Children’s Hospital Los Angeles! Cost Individual: $55 ($65 after 5/31/26) Families: $85 ($95 after 5/31/26) Weekend Agenda Friday, July 17, 2026 Adult Patient Session 2:00pm – 5:00pm The Adult Patient Advisory Council will host an adult patient session to help build connections within our adult patient - [Our Blog](https://www.bladderexstrophy.com/our-blog-2/) - Check out the latest news and stories from A-BE-C! Can’t find what you’re looking for? Search here: Search for: AllBladder HealthCatheterCenters of ExcellenceCommunityConferenceFeatured PostFeatured Research PostFundraiseFundraiserGlobal CareHomepageIndiaLiving with Bladder ExstrophyNewsProgramsReal PeopleResearchResearch on Bladder ExstrophyTreatment of Bladder ExstrophyUgandaUncategorizedVideoWebinarAll Bladder Health Catheter Centers of Excellence Community Conference Featured Post Featured Research Post Fundraise Fundraiser Global Care Homepage India Living with Bladder Exstrophy News Programs Real People Research Research on Bladder Exstrophy Treatment of Bladder Exstrophy Uganda Uncategorized Video Webinar Courage - [2026 Conference Save the Date](https://www.bladderexstrophy.com/save-the-date2026/) - Save the Date to join us in Los Angeles, CA for the 2026 International Exstrophy Conference hosted in conjunction with Children’s Hospital Los Angeles. Registration and welcome party on Friday, July 17th and conference sessions will run throughout the day on Saturday, July 18th. Stay tuned for more details! - [L.I.F.E. (Lifelong Insights For Exstrophy) Outcomes Survey](https://www.bladderexstrophy.com/lifelong-insights-exstrophy-outcomes-survey/) - Advancing care, advocacy, and research for generations to come. The L.I.F.E. (Lifelong Insights For Exstrophy) Outcomes Survey is a groundbreaking study developed by Dr. Hadley Wood and Dr. Annaliese Ionson from the Cleveland Clinic, and shaped by the lived experience of the exstrophy community. By gathering lifelong, patient-reported health and wellness data, the survey will - [Shop Our Store](https://www.bladderexstrophy.com/shop/) - Bladder Exstrophy Book Shop These books are thoughtfully created to educate, encourage, and support individuals and families impacted by bladder exstrophy and related conditions. Written by medical professionals, advocates, and members of the exstrophy community, each resource reflects a deep understanding of the lived experience. Whether you’re a parent looking for guidance, a patient seeking - [Centers of Excellence - Criteria](https://www.bladderexstrophy.com/centers-of-excellence-criteria/) - Centers of Excellence Criteria Association for the Bladder Exstrophy Community’s (A-BE-C’s) Centers of Excellence program is the first to identify criteria for the highest standards of treatment for bladder and cloacal exstrophy, including post-operative and long-term care. Each Center of Excellence on the list meets the following criteria deemed vital to treating the complex needs - [Adult Provider Directory](https://www.bladderexstrophy.com/adult-provider-directory/) - Adult Provider Directory This listing represents the most updated information we have gathered about urology providers treating adults with bladder exstrophy, epispadias, cloacal exstrophy, and related conditions. Establishing care with a new provider is sometimes a lengthy process. If you’re experiencing delays, our A-BE-C team may be able to help you get an appointment. For - [Center of Excellence - John's Hopkins](https://www.bladderexstrophy.com/center-of-excellence-johns-hopkins/) - Among the top centers in the nation for primary and reoperative surgery The Division of Pediatric Urology at Johns Hopkins Children’s Center is among the top centers in the nation for primary and reoperative surgery of bladder exstrophy, one of the most severe congenital birth defects. We provide comprehensive and compassionate care to diagnose and treat - [Grow the Roots](https://www.bladderexstrophy.com/grow-the-roots/) - [Find an Adult Provider](https://www.bladderexstrophy.com/find-an-adult-provider/) - We understand that finding an adult provider who specializes in exstrophy related conditions can be difficult. If you are having trouble locating a provider in your area please complete the form below. Make sure to check our adult provider directory for updated info about providers in your state. Adult Provider Request Name* First Last Date - [Appointment Assistance](https://www.bladderexstrophy.com/appointment-assistance/) - Establishing care with a new provider is sometimes a lengthy process. If you’re experiencing delays, our A-BE-C team may be able to help you get an appointment. For assistance, complete the form below. Adult Provider Appointment Assistance Name* First Last Date of Birth* MM slash DD slash YYYY Address* City State / Province / Region - [Add a Provider](https://www.bladderexstrophy.com/add-a-provider/) - We are working to grow our list of exstrophy providers in the U.S. and Canada. If you know a provider that should be featured in our directory, please submit the form below and someone will be in touch. Add a Provider I am a: Provider Patient Other Provider Name* First Last Name of Clinic/Hospital:Provider Address - [Adult Patient Advisory Council](https://www.bladderexstrophy.com/about/adult-patient-advisory-council/) - Adult Patient Advisory Council We are excited to announce the formation of the A-BE-C Adult Patient Advisory Council (APAC). Established in March of 2024, this council was created to serve as a vital link between our organization and the adult patient community. Adult Provider Directory – One of the greatest needs of adult patients is - [News](https://www.bladderexstrophy.com/news/) - In the News Sidra, HMC hold highly complex urological surgeries BJ alumnus, foreign doctors donate oxygen machines to Civil Hospital Press Releases SickKids Receives "Center of Excellence" Designation (2025) Fundació Puigvert Designated First International Center of Excellence in Bladder and Cloacal Exstrophy (2025) Humanitarian Award Presented to Dr. Joseph Borer (2025) Humanitarian Award Presented to - [Center of Excellence - Seattle Children's](https://www.bladderexstrophy.com/center-of-excellence-seattle-childrens/) - Highest-ranked program on the West Coast Our program is a world leader in the treatment of complex genital conditions and bladder malformations. At Seattle Children’s, we have excellent results caring for babies, children and teens with conditions that affect their urinary tract or genitals. We treat more patients with hypospadias than any other center in the region. - [2025 Annual Conference](https://www.bladderexstrophy.com/2025-annual-conference/) - The 2025 Conference is proudly hosted in conjunction with Boston Children’s Hospital! Weekend Agenda Friday, July 25, 2025 Adults With Exstrophy Get Together 3:30pm – 6:00pm Old Meeting House Boston Marriott Newton 2345 Commonwealth Avenue, Auburndale, MA 02466 Welcome Party and Registration 6:00pm – 8:00pm Pavillion Boston Marriott Newton 2345 Commonwealth Avenue, Auburndale, MA - [Frequently Asked Questions](https://www.bladderexstrophy.com/frequently-asked-questions/) - Frequently Asked Questions About A-BE-C Who is A-BE-C?The Association for the Bladder Exstrophy Community (A-BE-C) is a group of exstrophy patients, family members, and medical professional volunteers who want to help improve patients’ lives. About Us Our Leadership Medical Advisory Adult Patient Advisory Council What does A-BE-C do?ABEC is involved in many initiatives to help - [India](https://www.bladderexstrophy.com/indiacollaboration/) - A Unique Collaboration Since 2009, a team of surgeons, anesthesiologists, social workers, and other healthcare providers from hospitals in India and the U.S. have worked together to help children in Asia and Africa receive the complex surgery necessary to address bladder exstrophy. The International Bladder Exstrophy Collaborative (IBEC) is a unique surgical collaboration between Civil Hospital Ahmedabad, Children’s - [Sexual Challenges in Adults Living with Bladder Exstrophy | Buying Medicine Safe for Health](https://www.bladderexstrophy.com/buying-medicine-safe-for-health/) - Understanding Sexual Challenges in Adults Living with Bladder Exstrophy Bladder exstrophy is a rare congenital condition characterized by the exposure of the bladder outside the abdominal wall due to incomplete closure during fetal development. This anomaly often involves associated defects in the pelvic bones, genitalia, and urinary tract, requiring multiple surgical interventions from infancy through - [Medical Advisory Council](https://www.bladderexstrophy.com/about/medical-advisory-council/) - Advisory Council Association for the Bladder Exstrophy Community is fortunate to have support and guidance from many of the world’s experts in the treatment and management of bladder exstrophy. Advisory Board ChairEvalynn Vasquez, MD, MBADr. Evalynn Vasquez serves as the Director of Complex Reconstruction and Malformations Program and is an Assistant Professor of Urology working - [Center of Excellence - Ann & Robert H. Lurie Children's Hospital of Chicago](https://www.bladderexstrophy.com/center-of-excellence-ann-robert-h-lurie-childrens-hospital-of-chicago/) - Ranked among the top hospitals in the nation for urology care The Division of Urology at Lurie Children’s, ranked 7th in the nation by U.S.News & World Report, is the largest pediatric urology department in the region with more than 18,000 pediatric visits each year for both common and complex conditions. Our doctors can see your child for - [Center of Excellence - OKC Kids](https://www.bladderexstrophy.com/center-of-excellence-okc-kids/) - OKLAHOMA CITY'S PREMIER PEDIATRIC UROLOGY CLINIC ABOUT OKC KIDS UROLOGY OKC Kids Urology, under the direction of Dr. Bradley Kropp, is pleased to have established an exclusive collaboration with the INTEGRIS Children’s Hospital at Baptist Medical Center to serve and treat all age groups in the BE community. By combining the strengths of a successful - [Uganda](https://www.bladderexstrophy.com/uganda/) - Making a Difference Our Global Care Initiative expanded to Uganda in 2015 and A-BE-C continues to make a difference for BE individuals in resource poor countries. It is because of your generous donations A-BE-C has helped facilitate surgeries for children with BE in Uganda and flown Ugandan surgeons to India for medical training. But there - [2024 Annual Conference](https://www.bladderexstrophy.com/2024-annual-conference/) - The 2024 Conference is proudly hosted in conjunction with Children’s Wisconsin! Welcome Party & Registration Friday, August 2 | 6:00-8:00PM Sonesta Hotel 10499 Innovation Drive, Wauwatosa, WI 53226 Conference Sessions Saturday, August 3 | 8:00AM – 5:00PM Sonesta Hotel Conference Center We’re still finalizing the agenda, but experts from MIBEC will be part of our lineup and you - [Support Groups](https://www.bladderexstrophy.com/support-groups/) - Facebook Groups You must have a Facebook account and request permission to join these groups: Bladder Exstrophy Bladder Exstrophy Parent Tribe Bladder Exstrophy Survivors Group Texas Bladder Exstrophy Group Bladder Exstrophy India Bladder Exstrophy Houston Parents of UK children born with bladder exstrophy Bladder and Cloacal Exstrophy Awareness and Support Bladder and Cloacal Exstrophy: My - [Center of Excellence - Children's Hospital of Philadelphia](https://www.bladderexstrophy.com/center-of-excellence-childrens-hospital-of-philadelphia/) - World leader in pediatric urology The Division of Urology at Children’s Hospital of Philadelphia (CHOP) is a world leader in pediatric urology, offering specialized care for a wide range of urologic disorders in children and adolescents. Our team has special expertise in genito-urinary reconstruction, minimally invasive surgery, and the management of neurogenic bladder, kidney stones, disorders of - [Center of Excellence - Riley Children's Health](https://www.bladderexstrophy.com/center-of-excellence-riley-childrens-health/) - Access to the most advanced expertise for treating bladder exstrophy. Physicians and researchers at Riley at IU Health and the Indiana University School of Medicine are part of an alliance that joins experts at four other children’s hospitals in the Midwest to study bladder exstrophy and find better treatments. Because of its rarity and the - [Share Your Story](https://www.bladderexstrophy.com/share-your-story/) - Join us to raise awareness!This Giving Tuesday we need your help to raise awareness for bladder exstrophy. Inspire others and show the world:BE doesn't limit ME!Share your story! Tell us about the EXTRAORDINARY things you do with BE. Include photos or videos if you'd like. Your story could be featured on our website and social - [Research & Articles](https://www.bladderexstrophy.com/research/) - ResearchA-BE-C is committed to participating in research to further the treatment options for bladder exstrophy. ARTICLE: Patient-reported outcomes in adult females with bladder exstrophy An article based on a survey conducted in 2019 by Seattle Children’s and A-BE-C regarding adult females with exstrophy and their long-term sexual, reproductive, and urinary outcomes has been published. Study to - [Employer Match](https://www.bladderexstrophy.com/employer-match/) - Corporate Matching Program Did you know that most companies will match your donation? It’s easy and only takes a few minutes of your time. DonateMake your donation and save your tax receipt. Many matching programs will allow you to request a corporate match for up to one year after you’ve made your donation. Donate Now Reach - [Girl Version: "A Story About You and Your Special Bladder"](https://www.bladderexstrophy.com/girl-version-a-story-about-you-and-your-special-bladder/) - Girl Version: “A Story About You and Your Special Bladder” $15.00 Order Now Please enter the quantity of which version you'd like to purchase. Boy version Quantity Price: $15.00 Quantity Girl version Quantity Price: $15.00 Quantity Name(Required) First Last Email(Required) Phone(Required)Shipping Address(Required) Street Address Address Line 2 City State / Province / Region ZIP / - [Boy Version: "A Story About You and Your Special Bladder"](https://www.bladderexstrophy.com/boy-version-a-story-about-you-and-your-special-bladder/) - Boy Version: “A Story About You and Your Special Bladder” $15.00 Order Now Please enter the quantity of which version you'd like to purchase. Boy version Quantity Price: $15.00 Quantity Girl version Quantity Price: $15.00 Quantity Name(Required) First Last Email(Required) Phone(Required)Shipping Address(Required) Street Address Address Line 2 City State / Province / Region ZIP / - [Leadership](https://www.bladderexstrophy.com/leadership/) - Leadership Our leadership team is comprised of volunteers who have dedicated their lives to the mission of A-BE-C – that every individual with exstrophy is given the chance to reach their life’s full purpose and potential. President & Executive DirectorPamela ArtigasPamela is the adoptive mother of two medically complex children — one with bladder exstrophy - [Giving Tuesday 2022](https://www.bladderexstrophy.com/giving-tuesday-2022/) - Join us to raise awareness!This Giving Tuesday we need your help to raise awareness for bladder exstrophy. Inspire others and show the world:BE doesn't limit ME!Share your "BE doesn't limit ME" story! Download and print these tools to share your story. We will compile the images and videos to create a special slideshow that you can - [Armenia Medical Mission](https://www.bladderexstrophy.com/armenia-medical-mission/) - Armenia Medical Mission Planning is underway! Expert pediatric urologists will join a team of 40 doctors and medical experts in Armenia for the 7th Annual Armenia Medical Mission this fall. Two bladder exstrophy patients will be the beneficiaries of this global surgical workshop. Learn More Dr. Merguerian, at right, in the Arabkir Medical Center OR - [Armenia Medical Mission v1](https://www.bladderexstrophy.com/armenia-medical-mission-v1/) - Armenia Medical Mission Planning is underway! Expert pediatric urologists will join a team of 40 doctors and medical experts in Armenia for the 7th Annual Armenia Medical Mission this fall. Two bladder exstrophy patients will be the beneficiaries of this global surgical workshop. Learn More Dr. Merguerian, at right, in the Arabkir Medical Center OR - [2022 Annual Conference](https://www.bladderexstrophy.com/2022-annual-conference/) - Proudly hosted in conjunction with Johns Hopkins Join us for a joint conference and picnic July 8-9, 2022 at the Maritime Conference Center in Baltimore, MD. Please note, the following guidelines must be followed at all Johns Hopkins (JHM) events, regardless of whether the event occurs at a JHM location on or off-site: Universal face - [GIVE](https://www.bladderexstrophy.com/give/) - Ways to GiveA-BE-C relies solely on donations to continue its mission in supporting individuals and families with education, resources and community to help them navigate the medical and psychosocial issues relating to exstrophy at all stages of life. Watch Video (7:14 min) Give Now Donate Monthly Employer Match Fundraise for A-BE-C - [2022 Annual Conference Registration](https://www.bladderexstrophy.com/2022-annual-conference-draft/) - Proudly hosted in conjunction with Johns Hopkins We are beyond thrilled to announce that our IN PERSON joint conference and picnic has been re-scheduled for the weekend of July 9, 2022 at Johns Hopkins Children’s Center! Start making plans to join us in Baltimore! It’s been way too long and we CANNOT wait to see - [Center of Excellence - Boston Children's](https://www.bladderexstrophy.com/center-of-excellence-boston-childrens/) - Decades of experience in the care of patients with bladder exstrophy The Boston Children’s Hospital Bladder Exstrophy Program specializes in the care of children with bladder exstrophy, a rare and complex birth defect in which the bladder is turned “inside out.” As an established and dedicated program within the Department of Urology, our team has decades of experience performing surgeries - [Center of Excellence - Civil Hospital](https://www.bladderexstrophy.com/center-of-excellence-civil-hospital/) - World leader in pediatric urology Ahmedabad Civil Hospital is a public hospital located in Ahmedabad, India, with facilities for specialised diagnostic, therapeutic and rehabilitative patient care. The hospital campus spans 110 acres (45 ha) of land and houses the Gujarat Medical Council and Gujarat Nursing Council. It is affiliated to B.J. Medical College in Ahmedabad.It is one of the largest hospitals in Asia with most specialities - [Center of Excellence - Cincinnati Children's](https://www.bladderexstrophy.com/center-of-excellence-cincinnati-childrens/) - Comprehensive Care for Urological Problems The pediatric urology team at Cincinnati Children’s provides comprehensive, high-quality care for children who have conditions of the urological tract. Our experienced, highly trained physicians and nurse practitioners treat everything from bedwetting to kidney stones to birth defects that require reconstructive surgery. Appointments are available at our Burnet Campus, and - [Center of Excellence - Children's Hospital Los Angeles](https://www.bladderexstrophy.com/center-of-excellence-childrens-hospital-los-angeles/) - Ranked among the top hospitals in the nation for urology care U.S. News and World Report ranked CHLA No. 1 in the Western U.S. and Top 5 Hospital in the Nation. It’s easy to see why. CHLA’s Exstrophy Center of Excellence cares for each patient with a multidisciplinary approach. We understand the importance of every - [Center of Excellence - Children's Wisconsin](https://www.bladderexstrophy.com/center-of-excellence-childrens-wisconsin/) - Ranked among the top hospitals in the nation for urology care Children’s Wisconsin is a Center of Excellence and member of MIBEC (Multi Institutional Bladder Exstrophy Consortium) for bladder Exstrophy and Epispadias. Our goal is to help your child achieve the best possible bladder health and urinary control and active lifestyle. We focus on meticulous - [Bladder Exstrophy App Download](https://www.bladderexstrophy.com/app-download/) - Check out the NEW bladder exstrophy APP! ‘We the BE’ is an on-the-go resource for Bladder Exstrophy with quick access to a wide variety of topics, video learning and contact with specialists who can answer your questions. Download Now We the Be We the Be was developed by the exceptional team at OKC Kids Urology - [Bathroom Toolkit](https://www.bladderexstrophy.com/bathroom-toolkit/) - School Bathroom Toolkit We expect children with bladder exstrophy to thrive in all areas of the school setting, including academics, sports, clubs, social activities, and management of their healthcare needs. We offer areas to consider in developing best approaches. Toileting, continence care, missed class time due to hospitalizations or clinic appointments as well as peer - [Activate AmazonSmile](https://www.bladderexstrophy.com/give/amazonsmile/) - AmazonSmile & A-BE-C! You can support A-BE-C by simply using AmazonSmile for everyday purchases! AmazonSmile is the same Amazon. Same products, same prices, same service. Once you activate AmazonSmile, Amazon will automatically donate 0.5% of the price of your eligible purchases to the charitable organization of your choice. Activate Amazon Smile and start giving to A-BE-C! - [Videos](https://www.bladderexstrophy.com/videos/) - Documentaries These stunning documentaries beautifully capture the stories of our work abroad as part of our Global Care Initiative. A special thank you to David Pierce for his time and talents in bringing these stories to life. Video Library Whether you’re a patient, family member, clinician, student or supporter, A-BE-C’s growing library of videos are available - [Our Why](https://www.bladderexstrophy.com/our-why/) - Our WhySafe, affordable and timely treatment should be a standard of care for anyone in the world born with bladder exstrophy. It is not. A-BE-C is working with others to change that. You can help. Did You Know?In many parts of the world children born with exstrophy are left untreated, or an attempted repair is - [I'm New Here](https://www.bladderexstrophy.com/im-new-here/) - You're Not AloneWe know that hearing the initial diagnosis of bladder exstrophy can be devastating. It can also feel extremely overwhelming, leaving you feeling isolated. A-BE-C is here to help you navigate each step of your journey through bladder exstrophy. Connect with others What is Bladder Exstrophy? Bladder exstrophy is a rare birth defect in - [Donor Dashboard](https://www.bladderexstrophy.com/donor-dashboard/) - [give_donor_dashboard] - [Donor Dashboard](https://www.bladderexstrophy.com/donor-dashboard/) - [give_donor_dashboard] - [Donor Dashboard](https://www.bladderexstrophy.com/donor-dashboard/) - [give_donor_dashboard] - [US Chapters & Groups](https://www.bladderexstrophy.com/us-chapters-groups/) - US Chapters & GroupsA-BE-C affiliated chapters and organizations California Bladder Exstrophy Support Team (B.E.S.T.) Great Lakes Chapter (MI, MN, WI, IL, IN, NY, PA, and OH, and Ontario) Courage to Shine - [International Resources](https://www.bladderexstrophy.com/international-resources/) - International Resources These listings are not an endorsement of any physician or organization. The information provided here is for resource purposes only. AfricaUro Care Hospital, Kampala, Uganda Dr. Stephen Wayta (Uganda) Dr. Ranjiv Mathews (USA) Urologists/fellows from College of Surgeons of East, Central and Southern Africa (COSECSA) CanadaSick Kids Hospital Miriam Granger – Social Worker, - [Store](https://www.bladderexstrophy.com/store/) - [WP Shopify Collections](https://www.bladderexstrophy.com/collections/) - [WP Shopify Products](https://www.bladderexstrophy.com/products/) - [Support](https://www.bladderexstrophy.com/support/) - Bladder Exstrophy SupportIf you're looking to connect with others or need to find a physician, check here for our most popular links. US Chapters & Groups International Resources Support Groups Advocacy - [WEBINARS](https://www.bladderexstrophy.com/webinars/) - Webinars Bladder exstrophy is complex. It is normal to feel overwhelmed and even have a sense of helplessness when searching for evaluation and treatment. Making information available and understandable to those living with bladder exstrophy is the aim of this ongoing series of webinars. Each session features a presentation and live question and answer session. - [Affiliations and Organizations](https://www.bladderexstrophy.com/affiliations-and-organizations-abec/) - Organizations & Affiliations American Board of Urology American Urological Association (AUA) Bladder Health Alliance British Association of Urological Surgeons European Association of Urology French Urological Association Kidney and Urology Foundation of America Rare Diseases International The Societies for Pediatric Urology United Ostomy Association of America (UOAA) United Nations NGO Committee for Rare Diseases Urology Care - [What's Next?](https://www.bladderexstrophy.com/whats-next-2/) - What's Next?Our work around the globe continues. Check out the amazing things our team is working to build to support individuals with exstrophy. Expanding our Reach A-BE-C has committed to a five year initiative designed to treat under-served children and adults in resource poor countries and extend access to surgical interventions and other treatments through - [Subscriptions](https://www.bladderexstrophy.com/subscriptions/) - Sign up for our newsletter by completing the form below to receive updates, new webinars and more! Our website may contain sensitive content. By subscribing as well as visiting our site, you agree that you are 18 years of age and agree to our terms of use. You can opt out of our newsletter at - [Catheter Information](https://www.bladderexstrophy.com/catheter-information/) - BE Informed About Catheters The practice of regular catheterization or “cathing” is a necessary habit for many bladder exstrophy patients. Choosing and using the right catheter for body type and lifestyle, maintaining healthy cathing habits and flushing the bladder with a saline solution regularly, as recommended by a doctor are three ways to maintain good - [Give Now](https://www.bladderexstrophy.com/give-now/) - Give NowA-BE-C is a 501c3 organization so your donation is tax deductible. We rely exclusively on donations so any gift you can make is appreciated. Thank you for considering us in your charitable giving. Give Now $50A $50 donation could help us with things like administrative costs including website enhancements, social media outreach and referrals. - [Donate Monthly](https://www.bladderexstrophy.com/donate-monthly/) - Why Give Monthly?Becoming a monthly donor allows you to continuously support the vision and mission of A-BE-C - to allow each individual with exstrophy to live their life to the fullest purpose and potential. Donate Monthly Sustainable Monthly gifts allow us to create a plan and focus on certain areas of growth for the year - [Qgive](https://www.bladderexstrophy.com/qgive/) - [Fundraise for A-BE-C](https://www.bladderexstrophy.com/fundraise-for-a-be-c/) - BE a fundraiser for A-BE-C! Want to make a difference in a big way? Join the many others who have discovered they can raise money, have fun, and make a lasting positive impact on the lives of people living with this rare condition. Community fundraising plays a special part of A-BE-C’s work. Funds raised impact - [Privacy Policy](https://www.bladderexstrophy.com/privacy-policy/) - Privacy Policy Association for the Bladder Exstrophy Community (A-BE-C) has created this Privacy Policy to explain why we collect particular information and how we will protect your personal privacy within our website. The following discloses our information gathering and dissemination practices for the website located at the URL “www.bladderexstrophy.com.” In order to fully understand your - [Terms of Use](https://www.bladderexstrophy.com/terms-of-use/) - Updated February 18, 2020 Please read the following terms and policies carefully. When you use our website you acknowledge that you have read, understood, and agree to be bound by these terms and policies. These Terms of Service apply to the website that you are visiting, "www.bladderexstrophy.com" (the “Website”), which is owned by Association for - [Causes & Diagnosis](https://www.bladderexstrophy.com/causes-diagosis/) - What Causes Bladder Exstrophy? The condition of exstrophy occurs during the development of the embryo (the name given to the baby during this stage) very early in the pregnancy, about 4 to 5 weeks after conception. The cause and nature of the faulty development is not exactly certain. It is 4 to 5 weeks after - [OUR IMPACT](https://www.bladderexstrophy.com/why-2/) - [Resources](https://www.bladderexstrophy.com/resources-education-2/videos/) - [User Register](https://www.bladderexstrophy.com/user-register/) - [User Login](https://www.bladderexstrophy.com/user-login/) - [Forgot Password](https://www.bladderexstrophy.com/forgot-password/) - [Reset Password](https://www.bladderexstrophy.com/reset-password/) - [User Account](https://www.bladderexstrophy.com/user-account/) - [Conference FAQ](https://www.bladderexstrophy.com/conference-faq/) - [Contact Us](https://www.bladderexstrophy.com/contact-us/) - Contact A-BE-C General Inquiries General Inquiries Hello! Thank you for connecting with us. Our goal is to respond to each inquiry within 24 hours. Please complete the form below and someone will be with you ASAP. [wpforms id=”4713″] Seeking Medical Treatment? Seeking Treatment We do our best to respond in a timely manor to each - [Newsletter](https://www.bladderexstrophy.com/newsletter/) - AllCenters of ExcellenceCommunityGlobal CareHomepageIndiaLiving with Bladder ExstrophyUncategorizedVideoAll Centers of Excellence Community Global Care Homepage India Living with Bladder Exstrophy Uncategorized Video Courage to Shine 2026: Thomas Vincent At the 2026 A-BE-C Annual Conference in Los Angeles, Thomas was honored with the Courage to Shine Award in recognition of his remarkable journey and dedication to the bladder exstrophy community. In this inspiring reflection, he - [Newsletter](https://www.bladderexstrophy.com/newsletter-2/) - [newsletter] - [ABOUT US](https://www.bladderexstrophy.com/about/) - We take action behalf of 30,100 children, young people, parent carers across the UK. Lorem ipsum dolor sit amet, consectetur adipisicing elit Numquam uaerat atque, dolore. Amido ipsum dolor There are many variatons lorem passagei ofsit amet, consectetur adipisicing elit Numquam uaerat atque doloipsum dolor sit amet, consectetur. Donate Now 2540 Charity Donations 7325 Dream - [Steven Geek Page](https://www.bladderexstrophy.com/steven-geek-page/) - 01Best place of Iceland Tourism is financing funding Iceland hackathon accelerator long tail infographic influencer innovator travelers buzzing that land.Explore IcelandThe mountain peakIcelandWhite harbor lake Iceland02Best place of IcelandCamping Camping before perfect mineral mountainKayaking Kayaking before perfect mineral waterHiking Hiking before perfect mineral roadExplore More03FAQ about IcelandWhere to visit hewn I am in Island ?Supply - [Donor Advised Funds](https://www.bladderexstrophy.com/donor-advised-funds/) - [Diagnosis](https://www.bladderexstrophy.com/auto-draft/auto-draft-4/) - How is bladder exstrophy diagnosed?Sometimes, exstrophy is diagnosed when a pregnant woman has an ultrasound. The ultrasound doctor (radiologist) might notice the bladder is not full. But unborn babies pee often, making the bladder hard to see, and it is easy to miss seeing exstrophy. That is why many babies are diagnosed after they are - [Ways to give](https://www.bladderexstrophy.com/auto-draft-3/) - Four Ways to Support A-BE-CThe Association for the Bladder Exstrophy Community (A-BE-C) relies primarily on donations to continue its mission in supporting individuals and families with education, resources and community to help them navigate the medical and psychosocial issues relating to exstrophy at all stages of life. Here are four ways you can support A-BE-C. Charitable - [What's next?](https://www.bladderexstrophy.com/whats-next/) - [Catheter Information](https://www.bladderexstrophy.com/resources-education-2/subscriber-content/) - [Webinars](https://www.bladderexstrophy.com/resources-education-2/webinars/) - WebinarsLIVING WITH BLADDER EXSTROPHY WEBINAR SERIESBladder exstrophy is complex. It is normal to feel overwhelmed and even have a sense of helplessness when searching for evaluation and treatment. Making information available and understandable to those living with bladder exstrophy is the aim of this ongoing series of webinars. Each session features a presentation and live - [I'm new here](https://www.bladderexstrophy.com/auto-draft/im-new-here/) - Here is an intro titleThis is the supporting copyOverview of Bladder ExstrophyDr. William Reiner, professor of Pediatric Urology at the University of Oklahoma’s Department of Urology provides an excellent overview of bladder exstrophy in this webinar recorded on December 3, 2014 with a live audience. You’ll also hear the co-founders and executive director of A-BE-C - [Treatment](https://www.bladderexstrophy.com/diagnosis-2/) - [CLINICS](https://www.bladderexstrophy.com/clinics/) - [RESOURCES & EDUCATION](https://www.bladderexstrophy.com/resources-education-2/) - [WHAT IS BLADDER EXSTROPHY?](https://www.bladderexstrophy.com/auto-draft/) - A baby born with bladder exstrophy.What is Bladder Exstrophy?A bladder not formed correctlyBladder exstrophy (EK-struh-fee) is a bladder that is not formed correctly at birth. In most cases, the bladder and genitals are split in half, turned inside out and sit outside the body. The word “exstrophy” is derived from the Greek word ekstriphein, which - [RESOURCES & EDUCATION](https://www.bladderexstrophy.com/resources-education/) - [Treatment](https://www.bladderexstrophy.com/treatment/) - [Edit Your Profile](https://www.bladderexstrophy.com/register/edit-your-profile/) - [Update Billing Card](https://www.bladderexstrophy.com/register/update-billing-card/) - [Register](https://www.bladderexstrophy.com/register/) - [Welcome](https://www.bladderexstrophy.com/register/welcome/) - Welcome! This is your success page where members are redirected after completing their registration. - [Your Membership](https://www.bladderexstrophy.com/register/your-membership/) - [International Conference](https://www.bladderexstrophy.com/save-the-date-5/) - Save the Date! 2020 International Exstrophy Conference Johns Hopkins Baltimore, MD June 19-21, 2020 For updates on next year's conference and early registration information, become a subscriber and follow us on Facebook! - [Conference Streaming](https://www.bladderexstrophy.com/conference-streaming/) - Can't make it to the conference? We have you covered! Stream the International Exstrophy Conference LIVE on June 29 & 30 or watch on demand at a later date. All you have to do is register! We are asking for $25 donations to cover the cost of the stream and support the ongoing mission of A-BE-C. Thank you! - [Event Grid](https://www.bladderexstrophy.com/event-grid/) - 02 OctoberHelp Charities Without Leaving Home 09:00 - 15:00 By Vallejo, California10 OctoberUse Hashtags To Support Online 12:00 - 19:00 By Vallejo, California07 FebruaryUK Will Have School Lesson 10:00 - 19:00 By New Jersey, United States08 MayExcitement From A Quote About Charity 05:00 - 12:00 By Vallejo, California01 OctoberProvide Pure Water And Fresh Food For - [Conference](https://www.bladderexstrophy.com/2019-exstrophy-conference/) - [Events List](https://www.bladderexstrophy.com/events-list/) - Help Charities Without Leaving Home Vallejo, California02 October 2019 - 09:00 - 15:00View DetailsUse Hashtags To Support Online Vallejo, California10 October 2019 - 12:00 - 19:00View DetailsUK Will Have School Lesson New Jersey, United States07 February 2017 - 10:00 - 19:00View DetailsExcitement From A Quote About Charity Vallejo, California08 May 2017 - 05:00 - 12:00View - [Events Special](https://www.bladderexstrophy.com/events-special/) - Help Charities Without Leaving Home02 October 2019, 09:00 - 15:00Vallejo, CaliforniaUse Hashtags To Support Online10 October 2019, 12:00 - 19:00Vallejo, CaliforniaUK Will Have School Lesson07 February 2017, 10:00 - 19:00New Jersey, United StatesExcitement From A Quote About Charity08 May 2017, 05:00 - 12:00Vallejo, CaliforniaProvide Pure Water And Fresh Food For Syrian01 October 2017, 05:00 - - [Campaigns](https://www.bladderexstrophy.com/campaigns/) - [vc_give_forms_grid number_posts_show=”6″ items=”3″ responsive_table_items=”2″] - [Conference FAQs](https://www.bladderexstrophy.com/exstrophy-conference-faqs/) - [2019 Exstrophy Conference Registration](https://www.bladderexstrophy.com/register-2/) - Sorry, Registration is now closed. 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Reach out Contact your HR - [Bladder Health](https://www.bladderexstrophy.com/bladder-health/) - November is bladder health awareness month! - [Welcome](https://www.bladderexstrophy.com/subscriptions/welcomesubscribers/) - Thanks so much for becoming an A-BE-C subscriber. Whether you're at the premium or basic level, a library of videos is waiting for you. Enjoy! Watch for emails with verification of your subscription and updates on new content. - [Research](https://www.bladderexstrophy.com/subscriptions/research/) - [Living with Bladder Exstrophy](https://www.bladderexstrophy.com/subscriptions/living-bladder-exstrophy/) - [Research, Treatment & Care](https://www.bladderexstrophy.com/subscriptions/treatment-care/) - [Video series - Preparing your child for surgery](https://www.bladderexstrophy.com/subscriptions/video-series-preparing-child-surgery/) - For premium subscribers - [Videos series - How to talk about bladder exstrophy](https://www.bladderexstrophy.com/subscriptions/talk-bladder-exstrophy-series/) - For premium subscribers - [Subscriber](https://www.bladderexstrophy.com/subscriptions/login/) - Whether you're a patient, family member, clinician, student or supporter, A-BE-C's growing library of videos, reports and articles is here for you. Bladder exstrophy is a sensitive topic, so many resources are available only to subscribers. If you're not a subscriber, sign up today. Subscriptions are free! - [Log-in](https://www.bladderexstrophy.com/subscriptions/log-in/) - [Subscription Account](https://www.bladderexstrophy.com/subscriptions/account/) - [For Subscribers](https://www.bladderexstrophy.com/subscriptions/subscriber-basic/) - Thank you for being an A-BE-C subscriber. Access to A-BE-C's library of videos and recent webinars are unlocked and available to you through the links below. - [Basic Subscription Sign-Up](https://www.bladderexstrophy.com/subscriptions/basic-sign-up/) - [BE Informed about Catheters](https://www.bladderexstrophy.com/be-informed-about-catheters/) - The practice of regular catherization or "cathing" is a necessary habit for many bladder exstrophy patients. Choosing and using the right catheter for body type and lifestyle, maintaining healthy cathing habits and flushing the bladder with a saline solution regularly, as recommended by a doctor are three ways to maintain good health and overall well - [Causes](https://www.bladderexstrophy.com/understanding/causes/) - [Living with BE](https://www.bladderexstrophy.com/living-with-be/) - [Treatment](https://www.bladderexstrophy.com/treatment-2/) - [Research Trials](https://www.bladderexstrophy.com/research-trials/) - How patients and families can help advance the research You can get involved in the next scientific trial on the gene mutation discovered to be linked to bladder exstrophy. A larger sample size of people with bladder exstrophy is needed to help facilitate advancements in the research. Families can get involved by giving a blood - [Privacy Policy](https://www.bladderexstrophy.com/privacy-policy-2/) - Association for the Bladder Exstrophy Community (A-BE-C) has created this Privacy Policy to explain why we collect particular information and how we will protect your personal privacy within our website. The following discloses our information gathering and dissemination practices for the website located at the URL "www.bladderexstrophy.com." In order to fully understand your rights we - [Real People, Real Stories](https://www.bladderexstrophy.com/understanding/real-people-real-stories/) - [Show Your Support](https://www.bladderexstrophy.com/webinar-donor/) - Your contribution will help make expert information about the condition and treatment of bladder exstrophy available through the Living with Bladder Exstrophy webinar series and other programs. Please select a donation amount below or choose your own. - [Webinars](https://www.bladderexstrophy.com/webinars-2/) - LIVING WITH BLADDER EXSTROPHY WEBINAR SERIES Bladder exstrophy is complex. It is normal to feel overwhelmed and even have a sense of helplessness when searching for evaluation and treatment. Making information available and understandable to those living with bladder exstrophy is the aim of this ongoing series of webinars. Each session features a presentation and - [Contact](https://www.bladderexstrophy.com/contact-2/) - Hello! Whether you've been engaged with A-BE-C for a long time, or are just getting to know us, we welcome the opportunity to connect. Our office hours are 9 am to 5 pm Eastern time. If you're seeking help finding expert treatment for your child, please help us by providing some basic information through our - [Donate](https://www.bladderexstrophy.com/donate/) - [You are not alone](https://www.bladderexstrophy.com/you-are-not-alone/) - Bladder exstrophy is a rare birth defect in which the bladder has not formed correctly at birth. In most cases, the bladder and genitals are split in half, turned inside out and sit outside the body. If you can imagine a balloon that has been cut in two, opened up so that the inside of - [Join the mailing list](https://www.bladderexstrophy.com/mailing-list/) - Stay connected to A-BE-C by joining our mailing list and following us on Facebook. Join the A-BE-C mailing list. - [Understanding Bladder Exstrophy](https://www.bladderexstrophy.com/understanding/) - [Support](https://www.bladderexstrophy.com/understand/) ## Events - [Provide Pure Water And Fresh Food For Syrian](https://www.bladderexstrophy.com/events/provide-pure-water-and-fresh-food-for-syrian/) - Lorem Ipsum is simply dummy text of the printing and typesetting industry. Lorem Ipsum has been the industry’s standard dummy text ever since the 1500s, when an unknown printer took a galley of type and scrambled it to make a type specimen book. It has survived not only five centuries, but also the leap into - [Use Hashtags To Support Online](https://www.bladderexstrophy.com/events/use-hashtags-to-support-online/) - Lorem Ipsum is simply dummy text of the printing and typesetting industry. Lorem Ipsum has been the industry’s standard dummy text ever since the 1500s, when an unknown printer took a galley of type and scrambled it to make a type specimen book. It has survived not only five centuries, but also the leap into - [South African Pre Primary School Build](https://www.bladderexstrophy.com/events/south-african-pre-primary-school-build/) - Lorem Ipsum is simply dummy text of the printing and typesetting industry. Lorem Ipsum has been the industry’s standard dummy text ever since the 1500s, when an unknown printer took a galley of type and scrambled it to make a type specimen book. It has survived not only five centuries, but also the leap into - [Excitement From A Quote About Charity](https://www.bladderexstrophy.com/events/excitement-from-a-quote-about-charity/) - Lorem Ipsum is simply dummy text of the printing and typesetting industry. Lorem Ipsum has been the industry’s standard dummy text ever since the 1500s, when an unknown printer took a galley of type and scrambled it to make a type specimen book. It has survived not only five centuries, but also the leap into - [UK Will Have School Lesson](https://www.bladderexstrophy.com/events/uk-will-have-school-lesson/) - Lorem Ipsum is simply dummy text of the printing and typesetting industry. Lorem Ipsum has been the industry’s standard dummy text ever since the 1500s, when an unknown printer took a galley of type and scrambled it to make a type specimen book. It has survived not only five centuries, but also the leap into - [Help Charities Without Leaving Home](https://www.bladderexstrophy.com/events/help-charities-without-leaving-home/) - Lorem Ipsum is simply dummy text of the printing and typesetting industry. Lorem Ipsum has been the industry’s standard dummy text ever since the 1500s, when an unknown printer took a galley of type and scrambled it to make a type specimen book. It has survived not only five centuries, but also the leap into ## Footers - [footer 1](https://www.bladderexstrophy.com/footer-builder/footer-1/) - Association for the Bladder Exstrophy Community 505 Beachland Blvd Suite #1-180, Vero Beach, FL 32963 Email: admin@bladderexstrophy.com TaxID: 68-0252009 Sign up for our newsletter to receive updates, new webinars and more! SUBSCRIBE NOW Copyright ©2026 Association for the Bladder Exstrophy Community. All Rights Reserved About News Privacy Policy Terms - [Footer home main](https://www.bladderexstrophy.com/footer-builder/footer-home-main/) - Lorem Ipsum is simply dummy text of the printing and typesetting industry…. Useful Links Privacy Policy Resources Publications Make a complaint Newsletter Neque porro quisquam est qui dolorem ipsum quia dolor sit amet, consectetur, adipisci velit… Our Gallery Copyright ©2019 Bearsthemes. All Rights Reserved ## Events - [2025 Great Lakes Chapter 16th Annual Summer Campout](https://www.bladderexstrophy.com/event/2025-great-lakes-chapter-16th-annual-summer-campout/) - You are invited to join us for a weekend campout for anyone dealing with bladder exstrophy, cloacal exstrophy, epispadias and hypospadias and their families and friends. This is a great way to connect with other families, share in similar experiences and know that you are not alone! - [B.E.S.T. Campout](https://www.bladderexstrophy.com/event/b-e-s-t-campout/) - [2022 International Exstrophy Conference](https://www.bladderexstrophy.com/event/2022-international-exstrophy-conference/) - Proudly hosted in conjunction with Johns Hopkins - [Youth Rally 2022 (Virtual)](https://www.bladderexstrophy.com/event/youth-rally/) - Youth Rally will be in a virtual setting again in 2022. While we’d much rather be on-site, we’re excited to have the additional planning time in 2022. - [2021 Great Lakes Chapter 12th Annual Summer Campout](https://www.bladderexstrophy.com/event/great-lakes-chapter-12th-annual-summer-campout-2021/) - You are invited to join us for a weekend campout for anyone dealing with bladder exstrophy, cloacal exstrophy, epispadias and hypospadias and their families and friends. This is a great way to connect with other families, share in similar experiences and know that you are not alone! - [Annual 3 on 3 Basketball Tournament](https://www.bladderexstrophy.com/event/annual-3-on-3-basketball-tournament/) - 4th Annual BE Extraordinary 3-3 Basketball Tournament - [2020 B.E.S.T Campout](https://www.bladderexstrophy.com/event/2020-b-e-s-t-campout/) - California Bladder Exstrophy Support Team (California B.E.S.T.)’s Annual Campout is a wonderful event at one of the most breathtaking locations on earth, beautiful Lake Tahoe where we gather each year for a weekend of fun. The campground is found in Toiyabe National Forest in South Lake Tahoe. It is centrally located in South Lake Tahoe ## Projects - [The 2025 IBEC Conference at CIVIL Hospital](https://www.bladderexstrophy.com/project/india/) - Uniting the World’s Brightest Minds: The 2025 IBEC Conference at CIVIL Hospital Imagine a room filled with 51 of the world’s top pediatric urology specialists, all gathered with a single mission—to transform the lives of children born with bladder exstrophy. That’s exactly what happened at CIVIL Hospital, as it proudly hosted the 2025 International Bladder Exstrophy Collaborative - [2025 International Exstrophy Conference](https://www.bladderexstrophy.com/project/2020-exstrophy-conference/) - Freedom to Thrive! Join us on July 25 & 26th in Boston for our Annual Exstrophy Conference, proudly hosted in conjunction with Boston Children’s Hospital! Visit our conference page for more details! - [We the BE App](https://www.bladderexstrophy.com/project/we-the-be-app/) - ‘We the BE’ is an on-the-go resource for Bladder Exstrophy with quick access to a wide variety of topics, video learning and contact with specialists who can answer your questions. Download Now! - [Introducing the A-BE-C Bathroom Toolkit!](https://www.bladderexstrophy.com/project/introducing-the-a-be-c-bathroom-toolkit/) - A-BE-C has put together a variety of resources to help you and your student successfully communicate with your school administrators and teachers to implement healthy and necessary procedures. Our at-a-glance fact sheet can be used as a reference guide when setting up 504 plans or making other accommodation plans with your child’s teacher. The bladder exstrophy - [A-BE-C Seeking Corporate Partners](https://www.bladderexstrophy.com/project/fundraising/) - Global Care Fundraising Association for the Bladder Exstrophy Community launched its Global Care Fundraising Campaign in 2016. We strive to be an international support network for patients, families and physicians dealing with bladder exstrophy. Our goal and commitment is to ensure that all people affected by bladder exstrophy have the opportunity to realize their greatest - [Expanding Our Reach](https://www.bladderexstrophy.com/project/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 work with Uro Care Hospital to build a medical facility where children can both undergo surgeries and receive follow up treatments. Making an Impact in Uganda The success - [New! School Bathroom Policies](https://www.bladderexstrophy.com/project/school-policies/) - A-BE-C Advocates for Bladder Exstrophy Awareness and Education The Urology Care Foundation leads a coalition of 30 patient and physician advocacy organizations that work to advance bladder health awareness and education. For the past 4 years, A-BE-C has been a part of this dedicated alliance advocating on behalf of our community. In 2016, the Bladder Health Alliance was - [A-BE-C Receives Prototype For Exstrophy Underwear](https://www.bladderexstrophy.com/project/be-dry/) - A-BE-C has created a prototype for bladder exstrophy underwear. We are currently seeking investors for our project. Contact us for details or to find out how you can help! And stay tuned for more information about this exciting project! Support the BE Dry movement! ## Categories - [Uncategorized](https://www.bladderexstrophy.com/category/uncategorized/) - [Programs](https://www.bladderexstrophy.com/category/programs/) - [News](https://www.bladderexstrophy.com/category/news/) - [Treatment of Bladder Exstrophy](https://www.bladderexstrophy.com/category/treatment/) - [Living with Bladder Exstrophy](https://www.bladderexstrophy.com/category/livingwith/) - [Real People](https://www.bladderexstrophy.com/category/real-people/) - [Fundraiser](https://www.bladderexstrophy.com/category/fundraiser/) - [Global Care](https://www.bladderexstrophy.com/category/global-care/) - [Catheter](https://www.bladderexstrophy.com/category/catheter/) - [Community](https://www.bladderexstrophy.com/category/community/) - [Featured Research Post](https://www.bladderexstrophy.com/category/featured-research-post/) - [Research on Bladder Exstrophy](https://www.bladderexstrophy.com/category/research/) - [Homepage](https://www.bladderexstrophy.com/category/homepage/) - [Research](https://www.bladderexstrophy.com/category/research-3/) - [Bladder Health](https://www.bladderexstrophy.com/category/bladder-health/) - [Uganda](https://www.bladderexstrophy.com/category/uganda/) - [Fundraise](https://www.bladderexstrophy.com/category/fundraise/) - [Featured Post](https://www.bladderexstrophy.com/category/featured-post/) - [Webinar](https://www.bladderexstrophy.com/category/webinar/) - [Centers of Excellence](https://www.bladderexstrophy.com/category/centers-of-excellence/) - [Video](https://www.bladderexstrophy.com/category/video/) - [India](https://www.bladderexstrophy.com/category/india/) - [Conference](https://www.bladderexstrophy.com/category/conference/) ## Tags - [advisory board](https://www.bladderexstrophy.com/tag/advisory-board/) - [bladder exstrophy](https://www.bladderexstrophy.com/tag/bladder-exstrophy/) - [Dr. Evalynn Vasquez](https://www.bladderexstrophy.com/tag/dr-evalynn-vasquez/) - [Dr. Paul Merguerian](https://www.bladderexstrophy.com/tag/dr-paul-merguerian/) - [Misty Blue Foster](https://www.bladderexstrophy.com/tag/misty-blue-foster/) - [Faces of BE](https://www.bladderexstrophy.com/tag/faces-of-be/) - [Ann & Robert H. Lurie Children's Hospital of Chicago](https://www.bladderexstrophy.com/tag/ann-robert-h-lurie-childrens-hospital-of-chicago/) - [Centers of Excellence](https://www.bladderexstrophy.com/tag/centers-of-excellence/) - [Children's Hospital Chicago](https://www.bladderexstrophy.com/tag/childrens-hospital-chicago/) - [Lurie Children's Hospital](https://www.bladderexstrophy.com/tag/lurie-childrens-hospital/) - [3-on-3 basketball tournament](https://www.bladderexstrophy.com/tag/3-on-3-basketball-tournament/) - [3-on-3 basketball tourny](https://www.bladderexstrophy.com/tag/3-on-3-basketball-tourny/) - [Cook Children's Hospital](https://www.bladderexstrophy.com/tag/cook-childrens-hospital/) - [Dr. Blake Palmer](https://www.bladderexstrophy.com/tag/dr-blake-palmer/) - [Ahmedabad](https://www.bladderexstrophy.com/tag/ahmedabad/) - [Bladder Exstrophy Support Team](https://www.bladderexstrophy.com/tag/bladder-exstrophy-support-team/) - [dr pramod reddy](https://www.bladderexstrophy.com/tag/dr-pramod-reddy/) - 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[barbara neilson](https://www.bladderexstrophy.com/tag/barbara-neilson/) - [navigating the school systme](https://www.bladderexstrophy.com/tag/navigating-the-school-systme/) - [bladder health](https://www.bladderexstrophy.com/tag/bladder-health/) - [treatment of bladder exstrophy](https://www.bladderexstrophy.com/tag/treatment-of-bladder-exstrophy/) - [dr. marlo eldridge](https://www.bladderexstrophy.com/tag/dr-marlo-eldridge/) - [preparing your child for surgery](https://www.bladderexstrophy.com/tag/preparing-your-child-for-surgery/) - [John. 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