Association for the Bladder Exstrophy Community

10/15/2026

To the parents and caregivers in our BE community: What's one thing you wish someone had told you when your family first began navigating bladder exstrophy?

Your words might be exactly what another family needs to hear today. 💙

10/13/2026

Lima, Peru | CAU/SIUP Congress 2026

Honored to participate in the 2026 CAU/SIUP Congress in Lima, Peru, and to join the SIUP plenary session, Beyond Surgery: The Experience of Living with Bladder Exstrophy.

It was a privilege to share the patient and family perspective with leading pediatric urologists and colleagues from across Latin America and around the world. The impact of bladder exstrophy extends far beyond surgery, and collaboration is essential to improving care and lifelong outcomes.

My sincere thanks to Dra. Anna Bujons, President of SIUP, for inviting me to speak on this important topic and for creating space for the patient and family perspective within the international urology community.

Grateful for the opportunity to give families a voice at the table and continue building connections that can improve the lives of people affected by bladder exstrophy.

09/23/2026

The Association for the Bladder Exstrophy Community was honored to have a seat at the table at the Urology Care Foundation’s Annual Patient & Caregiver Conference.

Kim Allen and Pamela Artigas brought two important perspectives to the conversation. Pamela shared her experience as a caregiver and advocate navigating the pediatric challenges her family has faced, while Kim brought the lived experience of an adult patient.

What made the day especially meaningful was the opportunity for patients, caregivers, advocates, and physicians to learn from one another. Across the conversations, three priorities continued to rise to the surface: communication, trust, and shared decision-making.

When every voice has a place at the table, we can better understand what patients and families need throughout their care journey.

These are the conversations that help move patient-centered care forward, and A-BE-C is grateful to be part of them.

09/16/2026

SAVE THE DATE! 🇪🇸

This is one A-BE-C Conference you’re definitely going to want on your calendar.

Our 2027 A-BE-C International Exstrophy Conference is headed to Sitges, Spain, April 16–18, 2027!

We’re bringing the bladder exstrophy community together from around the world for a weekend of connection, education, support, and unforgettable experiences.

There’s plenty more to come, but for now:

📅 Save the date.
💰 Start the Spain fund.
🇪🇸 Get excited.
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¡RESERVA LA FECHA! 🇪🇸

Esta es una Conferencia de A-BE-C que definitivamente querrás tener en tu calendario.

¡Nuestra Conferencia Internacional de Extrofia de A-BE-C 2027 se celebrará en Sitges, España, del 16 al 18 de abril de 2027!

Reuniremos a la comunidad de extrofia vesical de todo el mundo para disfrutar de un fin de semana de conexión, educación, apoyo y experiencias inolvidables.

Hay mucho más por venir, pero por ahora:

📅 Reserva la fecha.
💰 Empieza a ahorrar para España.
🇪🇸 ¡Prepárate para emocionarte!

09/15/2026

SOMETHING NEW IS COMING TO A-BE-C! 💙

We’ve been working behind the scenes on a brand-new A-BE-C website, and we can’t wait to share it with you!

Our new site will make it easier to find the information, resources, support, and connections you need, whether you’re navigating a new diagnosis, looking for trusted information, or have been part of the bladder exstrophy community for years.

Same mission. More resources. A whole new look.

Stay tuned. The new A-BE-C website is coming soon! 💙✨

09/11/2026

BACK TO SCHOOL MEANS BACK TO BATHROOM ROUTINES

For children with bladder exstrophy, heading back to school can bring challenges that go far beyond homework and new schedules. Bathroom access, catheterization, privacy, missed class time and making sure teachers and staff understand your child’s needs can all require a little extra planning.

That’s why A-BE-C created our School Bathroom Toolkit, with resources designed to help families communicate with schools and advocate for the accommodations their children need to feel comfortable, confident and supported throughout the school day.

The toolkit includes an at-a-glance fact sheet, printable bathroom passes, a sample letter to initiate a 504 plan, physician forms and sample letters addressing incontinence and catheterization.

💙 You don’t have to start these conversations from scratch. Whether your child is starting a new school or simply has new teachers and staff this year, these resources can help get everyone on the same page.

👉 Explore A-BE-C’s 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 hosp...

09/10/2026

Parents, Your Child’s Experience Matters.

When your child is growing up with bladder exstrophy, cloacal exstrophy, or epispadias, you’re not just navigating the challenges of today. You’re also thinking about what their future may look like.

That’s why participation from parents of children and teens is so important to the L.I.F.E. (Lifelong Insights For Exstrophy) Outcomes Survey.

By sharing your child’s experiences now, you can help researchers better understand the needs of young people as they grow, identify gaps in care, and learn what can make a meaningful difference throughout their lives.

The information collected today can help lead to better care, better resources, and better outcomes for the next generation of the exstrophy community.

If your child is eligible, please take a few minutes to participate. Their experience can help shape what comes next.

The L.I.F.E. (Lifelong Insights For Exstrophy) Outcomes Registry is a groundbreaking effort shaped by the lived experience of the exstrophy community. By gathering lifelong, patient-reported health and wellness data, the survey will help create a clearer picture of what life with exstrophy truly loo...

09/01/2026

Madelyn is our next "BE Star" feature after receiving the 'Excellence: Leading the Way Award' at the AISES Regional Fair in Juneau for her research study, “The Effectiveness of Usnea’s Antibacterial Properties.”

Even more exciting, receiving this award earned Madelyn the opportunity to present her research at the AISES National Conference in October 2026!

Madelyn is in her senior year at Wrangell High School in Alaska, and plans on studying nursing or biochemistry at university next year. Madelyn is Alaska Native with Tlingit roots, and her own experiences navigating complex medical challenges have inspired a deeper interest in the traditional medicinal uses of Indigenous plants.

What an incredible accomplishment and opportunity to take her work to the national stage. Congratulations, Madelyn! We can’t wait to see where your curiosity, hard work, and research take you next.

08/27/2026

🌟 Meet Our BE Star: Connlan! 🌟

Today we’re cheering for 10-year-old Connlan from Prince Rupert, British Columbia! 🇨🇦🏒

Connlan and his hockey team recently became Division Zone Champions! Congratulations to Connlan and his entire team! ⭐💙

Have a milestone, victory, or passion to celebrate? Share your story, photo, or video with us! https://forms.gle/SFmuJxWGNan5e796A

08/25/2026

🌟 𝐌𝐞𝐞𝐭 𝐎𝐮𝐫 𝐁𝐄 𝐒𝐭𝐚𝐫: 𝐏𝐚𝐦! 🌟
Today we're celebrating Pam from Littleton, Colorado, who recently marked an incredible milestone, 30 years of marriage with her husband, Dave. 💙

"We've raised two terrific kids, had successful careers, and right before the (A-BE-C) conference we went cave kayaking in Santa Barbara, because our life together has been one big adventure with a lot of highs and some lows, just like the ocean tide!"

Congratulations, Pam and Dave, on 30 wonderful years together! Here's to many more years of making memories together! ⭐💙

Do you have a milestone, accomplishment, or special moment you'd like to celebrate? We'd love to feature YOU! https://forms.gle/SFmuJxWGNan5e796A