Association for the Bladder Exstrophy Community

04/07/2026

We're rolling out the red carpet for this year's conference attendees!
Get ready for an event where every attendee is treated like a star. From engaging sessions to meaningful conversations, this is your moment to shine.
🌟 Learn from industry leaders
🌟 Connect with peers from across the country
🌟 Be part of something unforgettable

Join us at Children’s Hospital Los Angeles and take your place in the spotlight.
⏰ Early bird pricing ends April 26. 👉 Register today: https://www.bladderexstrophy.com/annual-conference/

03/30/2026

💙 𝐇𝐚𝐩𝐩𝐲 𝐃𝐨𝐜𝐭𝐨𝐫'𝐬 𝐃𝐚𝐲! 💛
Help us recognize and thank the bladder exstrophy doctors who are committed to helping every patient live a fuller, healthier life. The ones who take on the most complex cases, who keep pushing forward, and who never lose sight of the people behind the diagnosis.

To these physicians: 𝘠𝘰𝘶𝘳 𝘪𝘮𝘱𝘢𝘤𝘵 𝘳𝘦𝘢𝘤𝘩𝘦𝘴 𝘧𝘢𝘳 𝘣𝘦𝘺𝘰𝘯𝘥 𝘮𝘦𝘥𝘪𝘤𝘪𝘯𝘦. 𝘠𝘰𝘶 𝘢𝘳𝘦 𝘤𝘩𝘢𝘯𝘨𝘪𝘯𝘨 𝘴𝘵𝘰𝘳𝘪𝘦𝘴, 𝘴𝘩𝘢𝘱𝘪𝘯𝘨 𝘧𝘶𝘵𝘶𝘳𝘦𝘴, 𝘢𝘯𝘥 𝘨𝘪𝘷𝘪𝘯𝘨 𝘧𝘢𝘮𝘪𝘭𝘪𝘦𝘴 𝘴𝘵𝘳𝘦𝘯𝘨𝘵𝘩 𝘢𝘭𝘰𝘯𝘨 𝘵𝘩𝘦 𝘸𝘢𝘺. 💙

✨ Tag a doctor who has made a difference in your journey or share a message of gratitude below! ⬇️

03/27/2026

The spotlight is calling… are you ready to Be the Star? ⭐

Join us at the A-BE-C Annual Conference at Children’s Hospital Los Angeles, where we’re rolling out the red carpet for an unforgettable experience. 🎥✨

⏳Don’t miss your chance to save! Early bird pricing ends April 26th
👉 Register now and secure your spot in the spotlight: https://www.bladderexstrophy.com/annual-conference/

03/13/2026

We are conducting a survey to better understand what families experienced at the time of diagnosis and during the decision-making process. We want to know what information was helpful, what was confusing, and what ultimately influenced the choice of surgeon and treatment path.

Please take a few minutes to fill out this survey. Responses are anonymous and will be used to share the parent perspective with surgeons and medical professionals during a panel discussion with Pediatric Urologists specializing in bladder exstrophy, cloacal exstrophy and epispadias repair at an upcoming medical meeting in Cincinnati.

🔗Take the survey: https://loom.ly/iZX98wk

03/12/2026

This past January in in Ahmedabad, India, 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.

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.

03/08/2026

⏰🐦Early bird registration is now open for the Annual Exstrophy Conference! Register before April 26th for discounted rates.

Individual: $55 ($65 after 4/26/26)
Families: $85 ($95 after 4/6/26)

Proudly hosted in partnership with Children's Hospital Los Angeles
SIGN UP NOW - https://www.bladderexstrophy.com/annual-conference/

03/06/2026

📣 Help represent the parent voice in the medical community!
We all know that the moment of diagnosis, whether it happened during a 20-week scan or in the delivery room, is life-changing. We are conducting a survey to better understand what families experienced at the time of diagnosis and during the decision-making process. We want to know what information was helpful, what was confusing, and what ultimately influenced the choice of surgeon and treatment path.

Responses are anonymous and will be shared during an upcoming panel discussion with Pediatric Urologists.
🔗Take the survey: https://loom.ly/iZX98wk

02/28/2026

Rare Disease Day is a globally coordinated movement dedicated to rare diseases, striving for equity in social opportunities, healthcare, and access to diagnosis and therapies for people living with a rare disease.
This year we dedicate Rare Disease Day to Janet Rankin, a steadfast advocate for bladder exstrophy. Janet passed away in October having lived with exstrophy for 73 years. She turned her own challenges into a mission to help others feel seen, supported, and empowered, leaving behind a legacy of love and advocacy.

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.

02/19/2026

𝕋𝕙𝕖 𝕍𝕚𝕤𝕚𝕠𝕟𝕒𝕣𝕚𝕖𝕤 𝔹𝕖𝕙𝕚𝕟𝕕 𝕥𝕙𝕖 𝔹𝕠𝕠𝕜
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

02/17/2026

𝑺𝒂𝒗𝒆 𝒕𝒉𝒆 𝑫𝒂𝒕𝒆 to join us in sunny Los Angeles, CA for the 2026 International Exstrophy Conference, hosted in conjunction with Children’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 calendar—we can’t wait to gather, connect, and move the exstrophy community forward together.
More details coming soon!

02/13/2026

We’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 “Advocacy for the Exstrophy Community: Empowering and Encouraging the Patient and Family.” 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 reference—it’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.

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