Association for the Bladder Exstrophy Community

05/28/2026

What’s holding you back from registering for the A-BE-C Annual Conference in Los Angeles?
We know “Los Angeles” can sound overwhelming—but we designed the experience to be smooth and stress-free from the moment you land.
✔️ Fly into Burbank (BUR) instead of LAX
✔️ Stay at the Hilton Garden Inn Burbank for a reduced group rate
✔️ Use our complimentary shuttles to CHLA and conference events
No navigating LA traffic. No guesswork. No stress.
Just arrive—we’ll take care of the rest.
REGISTER NOW: https://www.bladderexstrophy.com/annual-conference/

05/26/2026

The Adult Patient Advisory Council invites you to a dedicated Adult Patient Session (18+) as part of this year’s A-BE-C Annual Conference experience.

📅 Friday, July 17
🕑 2:00 PM – 5:00 PM
📍 Hilton Garden Inn Burbank Los Angeles

This session is designed specifically for adults living with bladder exstrophy (BE), cloacal exstrophy (CE), epispadias, and related conditions—creating a space to connect, share, and be heard.

Together, we will focus on:
💬 Building meaningful connections within the adult exstrophy community
🧭 Identifying age-specific needs and challenges
🔍 Exploring ways to improve lifelong management and care
🤝 Learning from shared lived experiences in an open, supportive environment

This patient session will be held at the hotel, and will not conflict with registration and other conference events.
Sign up: https://www.bladderexstrophy.com/annual-conference/

05/20/2026

This video features a powerful presentation given by Pamela Artigas to leading clinicians and experts in bladder exstrophy care from around the world.

Drawing directly from the experiences shared by 133 families, Pamela highlighted the urgent need for better communication, greater transparency, and a more united front when it comes to caring for children and families affected by bladder exstrophy.

The presentation challenged providers to look beyond surgical outcomes alone and truly listen to the emotional and lifelong impact families experience while navigating diagnosis, treatment decisions, and ongoing care.

Watch the presentation below. ⬇️

This presentation was delivered during a recent medical conference and marked an important step toward greater collaboration within the bladder exstrophy com...

05/19/2026

𝐅𝐞𝐚𝐭𝐮𝐫𝐞𝐝 𝐒𝐩𝐞𝐚𝐤𝐞𝐫: 𝐃𝐫. 𝐈𝐦𝐫𝐚𝐧 𝐌𝐮𝐬𝐡𝐭𝐚𝐪

We are honored to welcome Professor Imran Mushtaq, one of the world’s foremost leaders in pediatric urology, to this summer’s conference.

With more than 35 years of clinical experience, including 25 years as a Consultant Paediatric Urologist at the world-renowned Great Ormond Street Hospital in London, Professor Mushtaq is globally recognized for his pioneering work in bladder exstrophy care. He is also an internationally respected educator of the specialized Kelly Procedure.

At this year’s conference, he will present a clear, unbiased overview of bladder exstrophy management designed specifically for parents and families. Following his talk, he will join an interactive Q&A session - offering a rare opportunity to ask your questions directly to one of the leading experts in the field.

We are deeply grateful for his time and commitment to supporting our community, especially given his demanding international schedule.
Register now: https://www.bladderexstrophy.com/annual-conference/

05/14/2026

For years, families affected by bladder exstrophy have carried the weight of confusion, fear, and impossible decisions during some of the most vulnerable moments of their lives.

𝑩𝒖𝒕 𝒔𝒐𝒎𝒆𝒕𝒉𝒊𝒏𝒈 𝒓𝒆𝒎𝒂𝒓𝒌𝒂𝒃𝒍𝒆 𝒉𝒂𝒑𝒑𝒆𝒏𝒆𝒅 𝒓𝒆𝒄𝒆𝒏𝒕𝒍𝒚.

Global leaders in bladder exstrophy care came together with a shared goal: to listen to families, learn from one another, and move beyond division toward greater collaboration and transparency in care.

The conversation was driven by the voices of 133 families who shared their honest experiences with diagnosis, surgery, trust, and life beyond the operating room, helping spark a meaningful shift in how providers approach the future of exstrophy care.

Read the full blog below. ⬇️

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.

05/08/2026

🤩Step Into the Spotlight🤩
We want to celebrate YOU at the A-BE-C Conference this year! We’re creating a highlight reel of incredible BE stars, showcasing the strength, resilience, and unique journeys within our community.

Send us your shining moment, your biggest accomplishment, the achievement that makes you the most proud!
Here are some ideas to help spark inspiration—your “shining moment” can be anything that feels meaningful to you:

🎓 Graduating or reaching an academic milestone
🏅 Winning a game, race, or sports achievement
🎨 Finishing a creative project (art, music, writing, etc.)
🎤 Performing on stage or speaking in front of a group
💪 Overcoming a personal challenge or fear
🏕️ Attending camp or an event like Youth Rally
🚗 Learning a new life skill (driving, cooking, independence milestones)
💼 Starting a new job or volunteer role
🧡 Supporting or mentoring others in the BE community
🌍 Traveling somewhere new or trying something outside your comfort zone
📸 A moment that simply makes you feel proud of who you are

No moment is too big or too small—if it matters to you, it matters to us.
SUBMIT YOUR MOMENTS HERE: https://loom.ly/YroXJsE

05/06/2026

So many reasons to attend the A-BE-C Conference this year! ⭐

From adult patient–focused sessions to our “BE the Star” reel featuring YOUR best moments (stay tuned for details on submitting your photos/videos), this year is all about connection, learning, and celebrating this incredible community.

Don’t miss it! https://www.bladderexstrophy.com/annual-conference/

04/27/2026

Reminder: Registration for Youth Rally is open!
This incredible event creates a supportive, empowering environment for adolescents living with bowel and bladder conditions—helping them build confidence, independence, and lifelong friendships. It’s more than just a camp experience—it’s a place where teens can feel understood, encouraged, and inspired.
Don’t miss the opportunity to be part of something truly impactful. Secure your spot today! 💙

04/24/2026

⏰ Early pricing ends THIS weekend!

If you’re planning to attend, make sure you register by April 26 to lock in discounted rates.

Still on the fence? This conference is all about connection, support, and community. You’ll have the chance to:
✨ Connect with other exstrophy individuals and families
✨ Join sessions designed specifically for each audience (parents, teens, adults with exstrophy, etc)
✨ Learn from industry leaders
✨ Explore the latest in research and advocacy
✨ Walk the red carpet and share what makes YOU a star ⭐

There truly is something for everyone—and you won’t want to miss it.
👉 Register now before prices go up: https://www.bladderexstrophy.com/annual-conference

04/18/2026

Join us for the 2026 Annual Conference and take your place in the spotlight!

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

Register before April 26 for reduced pricing: https://www.bladderexstrophy.com/annual-conference/

04/08/2026

✨ Big news from ABEC ✨

We are exploring the possibility of hosting ABEC’s first-ever Global Conference on March 19–20, 2027, in Barcelona, Spain 🇪🇸 near PortAventura!

This is more than a conference — it’s an opportunity for families from around the world to come together, connect, learn, and create meaningful memories.

With the timing falling right around spring break for many U.S. families, this could be the perfect chance to turn the trip into a family vacation in Europe ☀️✈️

Would your family consider traveling to Europe for this incredible event?

Comment YES below if you’re interested 💛