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.

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

Living with exstrophy or epispadias often means learning how to carry pain quietly. Our Compassion Cultivation Workshop ...
01/06/2026

Living with exstrophy or epispadias often means learning how to carry pain quietly. Our Compassion Cultivation Workshop offers a safe space to gently notice, name, and soften that experience โ€” without pressure to โ€œfixโ€ anything.

If you missed our session in December, join us on January 22 to explore practical tools for self-compassion, mindfulness, and emotional resilience, alongside others who truly understand this journey.

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: https://loom.ly/Y-ANdLA

As 2025 draws to a close, we reflect on a year defined by expanded global reach, strengthened resources, and meaningful ...
12/31/2025

As 2025 draws to a close, we reflect 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.

We extend heartfelt gratitude to the families, supporters, clinicians, and partners who make this work possible. With continued collaboration and shared commitment to ethical, evidence-based care, the community is poised for further growth and impact in the year ahead.

See how your support helped shape this year and where weโ€™re headed next:

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...

During a recent trip to Spain, the Association for the Bladder Exstrophy Community (A-BE-C) participated in three meanin...
12/29/2025

During a recent trip to Spain, the Association for the Bladder Exstrophy Community (A-BE-C) participated in three meaningful engagements that together advanced global collaboration, clinical excellence, and patient-centered advocacy. These included a site visit to A-BE-Cโ€™s newest Bladder Exstrophy Center of Excellence at Fundaciรณ Puigvert in Barcelona, participation in the first-ever Global Congress on Advocacy and Community Collaboration, and continued partnership-building at the Asexve national conference in Madrid. Together, these moments reflect A-BE-Cโ€™s growing international impact and ongoing commitment to families affected by bladder exstrophy worldwide.

Read the full story here:

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 Collaborationโ€”a landmark gathering dedicated to improving care, awareness, and connection for individu...

This September, A-BE-C returned to Uganda for our 6th annual surgical workshop, continuing our partnership with EMERGENC...
12/22/2025

This September, A-BE-C returned to Uganda for our 6th annual surgical workshop, continuing our partnership with EMERGENCY Childrenโ€™s Hospital in Entebbe and expanding access to care for families across East Africa.

Read the full story here:

This September, A-BE-C returned to Uganda for our 6th annual surgical workshop at EMERGENCY Childrenโ€™s Hospital, providing expert surgical care and clinic services for more than 100 children and families from across East Africa.

Our End of the Year Newsletter is out and we're looking back on a year of impact. Here's what we accomplished together i...
12/19/2025

Our End of the Year Newsletter is out and we're looking back on a year of impact. Here's what we accomplished together in 2025: https://loom.ly/ga0KOvs

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