Association for the Bladder Exstrophy Community

The Association for the Bladder Exstrophy (A-BE-C) exists to ensure that all children born with bladder exstrophy have the opportunity to live full and productive lives and realize their greatest life purpose and potential. Patient services dealing with the birth defects of epispadias, bladder exstrophy, classic exstrophy, classic bladder exstrophy, cloacal exstrophy, from birth through adulthood.

A-BE-C has officially touched down in Washington, D.C. for the  !!Our Executive Director, Pamela Artigas and the A-BE-C ...
02/21/2026

A-BE-C has officially touched down in Washington, D.C. for the !!

Our Executive Director, Pamela Artigas and the A-BE-C Adult Patient Advisory Council have traveled from across the country to stand together as a unified voice for our community.

Over the next four days, this dedicated team of advocates will join 350+ participants from 47 states to ensure that "rare" is never overlooked in healthcare policy.

We are prepared to take patient stories directly to Capitol Hill, advocating for the removal of insurance barriers like Prior Authorization and "Fail First" policies that delay specialized urologic care.

Stay tuned for updates as our team fights for the future of our community.

๐•‹๐•™๐•– ๐•๐•š๐•ค๐•š๐• ๐•Ÿ๐•’๐•ฃ๐•š๐•–๐•ค ๐”น๐•–๐•™๐•š๐•Ÿ๐•• ๐•ฅ๐•™๐•– ๐”น๐• ๐• ๐•œ Pictured left to right: Pramod Reddy, Jaishri Ramji, Paul Merguerian, Joao Pippi Salle, ...
02/19/2026

๐•‹๐•™๐•– ๐•๐•š๐•ค๐•š๐• ๐•Ÿ๐•’๐•ฃ๐•š๐•–๐•ค ๐”น๐•–๐•™๐•š๐•Ÿ๐•• ๐•ฅ๐•™๐•– ๐”น๐• ๐• ๐•œ
Pictured left to right: Pramod Reddy, Jaishri Ramji, Paul Merguerian, Joao Pippi Salle, Rakesh S. Joshi (Editor-in-Chief), Aseem R. Shukla (Editor-in-Chief), Dana A. Weiss

This nearly 500-page volume unites world-renowned experts to provide an evidence-based roadmap for managing the bladder exstrophy-epispadias complex (BEEC), covering everything from prenatal diagnosis to complex surgical reconstruction.

Learn more and purchase! (Get 20% off with code: SPRAUT)
https://www.awin1.com/cread.php?awinmid=26429&awinaffid=2766340&ued=https%3A%2F%2Fwww.bladderexstrophy.com%2Fshop%2F

๐‘บ๐’‚๐’—๐’† ๐’•๐’‰๐’† ๐‘ซ๐’‚๐’•๐’† to join us in sunny Los Angeles, CA for the 2026 International Exstrophy Conference, hosted in conjunction...
02/17/2026

๐‘บ๐’‚๐’—๐’† ๐’•๐’‰๐’† ๐‘ซ๐’‚๐’•๐’† to join us in sunny Los Angeles, CA for the 2026 International Exstrophy Conference, hosted in conjunction with Childrenโ€™s Hospital Los Angeles.
We're kicking things off with registration and a welcome party on Friday, July 17, followed by a full day of inspiring conference sessions on Saturday, July 18.
Mark your calendarโ€”we canโ€™t wait to gather, connect, and move the exstrophy community forward together.
More details coming soon!

Weโ€™re proud to see advocacy so thoughtfully represented in this landmark resource, and even more proud of the voices hel...
02/13/2026

Weโ€™re proud to see advocacy so thoughtfully represented in this landmark resource, and even more proud of the voices helping ensure our community is seen, supported, and strengthened.

In the newly released Bladder Exstrophy and Epispadias: A Compendium, A-BE-C Executive Director, Pamela Artigas and Advisory Board Member, Emily Haddad, authored the chapter โ€œAdvocacy for the Exstrophy Community: Empowering and Encouraging the Patient and Family.โ€ Their work shines a light on something our community has long known to be true: living with the bladder exstrophy-epispadias complex extends far beyond medical care.

This chapter addresses the emotional and social challenges families often face and underscores the critical role advocacy plays in building connection, understanding, and long-term quality of life. For families, caregivers, and professionals, this book is more than a medical referenceโ€”itโ€™s a valuable resource for empowerment and support.

We encourage families to add this important book to their library and help support advocacy efforts that ensure no one in our community walks this journey alone.

๐Ÿ“˜ Learn more and purchase: https://www.awin1.com/cread.php?awinmid=26429&awinaffid=2766340&ued=https%3A%2F%2Fwww.bladderexstrophy.com%2Fshop%2F
๐Ÿ’™ Enjoy 20% off with code: SPRAUT

We are proud to celebrate the release of "Bladder Exstrophy and Epispadias: A Compendium," a definitive global resource ...
02/12/2026

We are proud to celebrate the release of "Bladder Exstrophy and Epispadias: A Compendium," a definitive global resource for the medical community. This nearly 500-page volume unites world-renowned experts to provide an evidence-based roadmap for managing the bladder exstrophy-epispadias complex (BEEC), covering everything from prenatal diagnosis to complex surgical reconstruction.

While this compendium was meticulously written for the medical community, it serves as an invaluable resource for families navigating a BEEC diagnosis. By providing a clear window into the latest surgical considerations, expected outcomes, and long-term management strategies, it empowers parents and patients with the knowledge needed to advocate for the highest standard of care. We encourage families to explore this text to better understand the clinical landscape of their lifelong journey.

Click here to learn more and purchase!
https://www.awin1.com/cread.php?awinmid=26429&awinaffid=2766340&ued=https%3A%2F%2Fwww.bladderexstrophy.com%2Fshop%2F

FINAL reminder to join us TOMORROW!REGISTER ๐Ÿ‘‰ https://loom.ly/LQBadm4Dr. Hadley Wood, adult reconstructive urologist fro...
01/26/2026

FINAL reminder to join us TOMORROW!
REGISTER ๐Ÿ‘‰ https://loom.ly/LQBadm4
Dr. Hadley Wood, adult reconstructive urologist from the Cleveland Clinic, and Dr. Dan Wood, adolescent and reconstructive urologist from the University of Colorado School of Medicine will lead this important discussion on the Long Term Success of Bladder Diversions.

๐‘บ๐’†๐’—๐’†๐’ ๐‘ซ๐’‚๐’š๐’”. ๐‘ถ๐’๐’† ๐‘ช๐’๐’Ž๐’Ž๐’–๐’๐’Š๐’•๐’š. ๐‘ช๐’๐’–๐’๐’•๐’๐’†๐’”๐’” ๐‘ณ๐’Š๐’—๐’†๐’” ๐‘ป๐’๐’–๐’„๐’‰๐’†๐’….As the 18th Annual International Bladder Exstrophy Collaborative (IBE...
01/23/2026

๐‘บ๐’†๐’—๐’†๐’ ๐‘ซ๐’‚๐’š๐’”. ๐‘ถ๐’๐’† ๐‘ช๐’๐’Ž๐’Ž๐’–๐’๐’Š๐’•๐’š. ๐‘ช๐’๐’–๐’๐’•๐’๐’†๐’”๐’” ๐‘ณ๐’Š๐’—๐’†๐’” ๐‘ป๐’๐’–๐’„๐’‰๐’†๐’….
As the 18th Annual International Bladder Exstrophy Collaborative (IBEC) comes to a close, this week leaves us with far more than numbers or headlines.

Over seven days, 56 attendees came together from India and the United States, joined by colleagues and friends traveling from Canada, Spain, Brazil, Colombia, Kuwait, Kazakhstan, Belgium, Qatar, and South Koreaโ€”coming together as one global community with a shared purpose.

๐—•๐—ฒ๐˜†๐—ผ๐—ป๐—ฑ ๐—ฆ๐˜‚๐—ฟ๐—ด๐—ฒ๐—ฟ๐˜†: ๐—–๐—ฎ๐—ฟ๐—ถ๐—ป๐—ด ๐—ณ๐—ผ๐—ฟ ๐˜๐—ต๐—ฒ ๐—ช๐—ต๐—ผ๐—น๐—ฒ ๐—–๐—ต๐—ถ๐—น๐—ฑ
This week focused on nursing education, thoughtful pain management, physical therapy training, and ongoing research that will shape care far beyond this workshop. It was about residents and trainees honoring the work, old friends showing up year after year, and new relationships forming between clinicians, families, and advocates.

๐— ๐—ผ๐˜€๐˜ ๐—ผ๐—ณ ๐—ฎ๐—น๐—น, ๐—ถ๐˜ ๐˜„๐—ฎ๐˜€ ๐—ฎ๐—ฏ๐—ผ๐˜‚๐˜ ๐—ณ๐—ฎ๐—บ๐—ถ๐—น๐—ถ๐—ฒ๐˜€.
One father shared something that stayed with many of us. For four years, he came to this workshop supporting other familiesโ€”offering reassurance, guidance, and strength. This year, his own daughter needed major surgery. When he signed the consent papers, he said the reality finally hit him. He was no longer the caregiver for othersโ€”he was simply a father protecting his child. And he cried.

That moment captured what this week is really about:
๐˜ฆ๐˜น๐˜ฑ๐˜ฆ๐˜ณ๐˜ต๐˜ช๐˜ด๐˜ฆ ๐˜ข๐˜ฏ๐˜ฅ ๐˜ค๐˜ฐ๐˜ฎ๐˜ฑ๐˜ข๐˜ด๐˜ด๐˜ช๐˜ฐ๐˜ฏ, ๐˜ด๐˜ค๐˜ช๐˜ฆ๐˜ฏ๐˜ค๐˜ฆ ๐˜ข๐˜ฏ๐˜ฅ ๐˜ฉ๐˜ถ๐˜ฎ๐˜ข๐˜ฏ๐˜ช๐˜ต๐˜บ, ๐˜ค๐˜ข๐˜ณ๐˜ฆ ๐˜จ๐˜ช๐˜ท๐˜ฆ๐˜ฏโ€”๐˜ข๐˜ฏ๐˜ฅ ๐˜ค๐˜ข๐˜ณ๐˜ฆ ๐˜ณ๐˜ฆ๐˜ค๐˜ฆ๐˜ช๐˜ท๐˜ฆ๐˜ฅ.

As this chapter closes, the work continues. The bonds formed here, the knowledge shared, and the trust built with families will carry forward long after this week ends. Grateful for every family, every clinician, every learner, and every quiet moment of courage that made this week what it was.

This week in India, the Association for the Bladder Exstrophy Community (A-BE-C) had the honor of distributing BE-DRYยฎ, ...
01/21/2026

This week in India, the Association for the Bladder Exstrophy Community (A-BE-C) had the honor of distributing BE-DRYยฎ, a reusable continence underwear system developed by A-BE-C, to children receiving care at CIVIL Hospital Ahmedabad, in collaboration with the International Bladder Exstrophy Collaborative (IBEC).

For many children born with bladder exstrophy, urinary leakage is not just a medical issue โ€” it is a daily barrier to education, confidence, and dignity. In low-resource settings, families often cannot afford disposable diapers or continence products, and children are frequently asked to leave school once they become wet. Over time, many stop attending altogether.

BE-DRYยฎ was created to address that reality.

This program has been more than a decade in the making โ€” shaped by families, informed by clinicians, refined through research and real-world use, and guided by lived experience. The goal has always been simple but profound: to help children stay in school and participate fully in daily life without shame.

Seeing children try on BE-DRYยฎ and sit a little taller is a powerful reminder that continence care is not an โ€œextra.โ€ It is foundational to education, mental health, and long-term independence.

A-BE-C is deeply grateful to our long-standing clinical partners at CIVIL Hospital Ahmedabad, to the IBEC network for their continued collaboration, and to the families who trust us with their stories and their children.

We also appreciate the local philanthropic support of Mr. Vinay Modi and Mrs. Anju Modi, whose contribution helped support the production and local distribution of BE-DRYยฎ absorbent pads for children attending this yearโ€™s workshop. Their support enabled more families to access continence care during the program.

Looking ahead, A-BE-C is focused on expanding manufacturing and global distribution to reach more families with sustainable, dignified continence care.

If youโ€™d like to support this work or learn more, you can visit www.bladderexstrophy.com

๐—•๐˜‚๐—ถ๐—น๐—ฑ๐—ถ๐—ป๐—ด ๐—›๐—ผ๐—ฝ๐—ฒ ๐—ง๐—ผ๐—ด๐—ฒ๐˜๐—ต๐—ฒ๐—ฟ ๐—ฎ๐˜ ๐—–๐—ถ๐˜ƒ๐—ถ๐—น ๐—›๐—ผ๐˜€๐—ฝ๐—ถ๐˜๐—ฎ๐—น, ๐—”๐—ต๐—บ๐—ฒ๐—ฑ๐—ฎ๐—ฏ๐—ฎ๐—ฑ, ๐—œ๐—ป๐—ฑ๐—ถ๐—ฎThe 18th Annual Exstrophy Workshop opened with two meaningful ...
01/21/2026

๐—•๐˜‚๐—ถ๐—น๐—ฑ๐—ถ๐—ป๐—ด ๐—›๐—ผ๐—ฝ๐—ฒ ๐—ง๐—ผ๐—ด๐—ฒ๐˜๐—ต๐—ฒ๐—ฟ ๐—ฎ๐˜ ๐—–๐—ถ๐˜ƒ๐—ถ๐—น ๐—›๐—ผ๐˜€๐—ฝ๐—ถ๐˜๐—ฎ๐—น, ๐—”๐—ต๐—บ๐—ฒ๐—ฑ๐—ฎ๐—ฏ๐—ฎ๐—ฑ, ๐—œ๐—ป๐—ฑ๐—ถ๐—ฎ
The 18th Annual Exstrophy Workshop opened with two meaningful days at Civil Hospital, launching an intensive seven-day surgical and educational program dedicated to children born with Bladder Exstrophy.

Families traveled from across India to receive care from a distinguished international medical team. More than 50 pediatric urologists and trainees from around the worldโ€”bringing together experienced exstrophy surgeons alongside fellows and observers here to learnโ€”gathered for collaboration, shared learning, and careful evaluation, laying the groundwork for the surgical work to follow.

๐—ง๐˜„๐—ผ ๐——๐—ฎ๐˜†๐˜€ ๐—ผ๐—ณ ๐—–๐—น๐—ถ๐—ป๐—ถ๐—ฐ ๐—ฎ๐—ป๐—ฑ ๐—–๐—ผ๐—ป๐—ป๐—ฒ๐—ฐ๐˜๐—ถ๐—ผ๐—ป
The first two days centered on comprehensive clinic evaluations and family consultations. Children were assessed by experienced surgeons, while parents had time to ask questions, understand care pathways, and plan next steps.

Equally powerful were the connections formed between families. Many met others navigating similar challenges for the first time. New families were welcomed by teenagers who have attended this workshop for yearsโ€”some since infancyโ€”offering a powerful, full-circle vision of what long-term care and support can make possible.

๐—Ÿ๐—ฒ๐—ฎ๐—ฟ๐—ป๐—ถ๐—ป๐—ด ๐˜๐—ผ ๐—Ÿ๐—ถ๐˜ƒ๐—ฒ ๐—ฎ๐—ป๐—ฑ ๐—ง๐—ต๐—ฟ๐—ถ๐˜ƒ๐—ฒ
Families later joined the medical team for a discussion focused on thriving across all stages of life. Pamela Artigas, Executive Director of A-BE-C and a parent of a child born with bladder exstrophy, shared words of encouragement grounded in both leadership and lived experience. Through years of dedication to families in India, she is affectionately known as the โ€œadoptive mother of 300 children in India,โ€ a title given by Dr. Rakesh Joshi, Superintendent of Civil Hospital.

Families also heard from Dr. Pramod Reddy of Cincinnati Childrenโ€™s Hospital Medical Center, who shared insight into caring for patients with bladder exstrophy from childhood through adulthood.

๐‘ฑ๐’–๐’”๐’• ๐’•๐’‰๐’† ๐‘ฉ๐’†๐’ˆ๐’Š๐’๐’๐’Š๐’๐’ˆ
These first days set the stage for the week ahead, as surgeries, research, and continued collaboration beginโ€”demonstrating the power of global partnership and sustained investment in care.

Don't forget to register for our upcoming webinar:  Long Term Success of Bladder DiversionsDr. Hadley Wood, adult recons...
01/20/2026

Don't forget to register for our upcoming webinar: Long Term Success of Bladder Diversions

Dr. Hadley Wood, adult reconstructive urologist from the Cleveland Clinic, and Dr. Dan Wood, adolescent and reconstructive urologist from the University of Colorado School of Medicine will lead this important discussion.

Tuesday, January 27th
8:00-9:00PM Eastern Time

REGISTER NOW: https://loom.ly/LQBadm4

The Adult Patient Advisory Council (APAC) will host the inaugural Ask-Me-Anything patient educational webinar, featuring...
01/15/2026

The Adult Patient Advisory Council (APAC) will host the inaugural Ask-Me-Anything patient educational webinar, featuring Dr. Hadley Wood, adult reconstructive urologist from the Cleveland Clinic, and Dr. Dan Wood, adolescent and reconstructive urologist from the University of Colorado School of Medicine.

Join us Tuesday, January 27th
8:00-9:00PM Eastern Time

REGISTER NOW: https://loom.ly/LQBadm4

Reminder to Register!Our Compassion Cultivation Workshop is coming up on January 22, and weโ€™d love to have you join us.T...
01/14/2026

Reminder to Register!
Our Compassion Cultivation Workshop is coming up on January 22, and weโ€™d love to have you join us.

This is the same workshop we offered in December โ€” designed to be welcoming, accessible, and supportive, whether or not you have prior experience with mindfulness or meditation. Together, weโ€™ll explore practical tools for self-compassion, emotional resilience, and the mindโ€“body connection in a safe, understanding space.

Thursday, January 22 | 7:00โ€“9:00 PM ET
FREE for adult members of A-BE-C and the Hypospadias & Epispadias Association

๐Ÿ‘‰ Register now to save your spot: https://loom.ly/Y-ANdLA

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