Association for the Bladder Exstrophy Community

17/07/2025

Can't make it to Boston but still want to participate in our annual exstrophy conference?
💻 Stream the sessions LIVE via Zoom!
⏰ Saturday, July 26th | 8:00AM – 4:00PM EASTERN Standard Time
📝Check out the Agenda: https://loom.ly/fZH9tws
👩‍💻REGISTER NOW - https://loom.ly/2T2Seos

15/07/2025

𝗛𝗲𝗹𝗽 𝗢𝗻𝗲 𝗖𝗵𝗶𝗹𝗱 𝗥𝗲𝗮𝗰𝗵 𝗟𝗶𝗳𝗲-𝗦𝗮𝘃𝗶𝗻𝗴 𝗦𝘂𝗿𝗴𝗲𝗿𝘆
This September, ABEC returns to Uganda to perform surgeries and provide follow-up care for children with bladder exstrophy—a rare, life-threatening birth defect.

𝐓𝐡𝐞 𝐬𝐮𝐫𝐠𝐞𝐫𝐢𝐞𝐬 𝐚𝐫𝐞 𝐟𝐫𝐞𝐞. 𝐓𝐡𝐞 𝐛𝐚𝐫𝐫𝐢𝐞𝐫 𝐢𝐬 𝐭𝐫𝐚𝐧𝐬𝐩𝐨𝐫𝐭𝐚𝐭𝐢𝐨𝐧.
Most families live in remote villages and can’t afford the trip to the hospital in Entebbe. Without help, they simply can’t get there.
💙Learn more about our upcoming trip and how you can help:

Since 2019, A-BE-C has deepened its commitment to children with bladder exstrophy in Uganda with the A-BE-C Uganda Initiative, a team of passionate surgeons, nurses, and social workers who travel to Uganda each year. These volunteers pay their own way, leave their families behind, and work alongside...

14/07/2025

✨ Monday Motivation ✨
To all the incredible kids, parents, and families in the bladder exstrophy community: your strength inspires us every single day. 💙

Let this week be another reminder that you are braver, tougher, and more loved than you may realize.

10/07/2025

💙 We’re so proud to see Kimberly Allen representing our community in the latest AUA patient perspectives video!

As part of our Adult Patient Advisory Council (APAC), Kimberly brings invaluable insight and advocacy for adult bladder exstrophy patients — helping to shape resources, conversations, and awareness that didn’t exist before.

The American Urological Association knows that patient voices make care better for everyone, which is why including patient perspectives is a cornerstone of their Annual Meeting.

Thank you, Kimberly, for sharing your story and leadership — your impact reaches far and wide!
https://youtu.be/2ve4FRh6_Ho?si=ouEctypyoeMrE0QP

Including Patient Perspectives is essential to any field in medicine, not least in urology, and the American Urological Association makes sure to include pat...

09/07/2025

𝗡𝗼 𝗰𝗵𝗶𝗹𝗱 𝘀𝗵𝗼𝘂𝗹𝗱 𝗯𝗲 𝗹𝗲𝗳𝘁 𝗯𝗲𝗵𝗶𝗻𝗱.
This Fall, A-BE-C will return to Uganda for our annual surgical workshop, where we’ll perform life-changing surgeries, provide follow-up care, and host our beloved Family Education Day.

ʙᴜᴛ ᴛʜᴇʀᴇ’ꜱ ᴀ ᴘʀᴏʙʟᴇᴍ:
Many families can’t afford to get there.
Most children affected by bladder exstrophy live in rural areas, far from the hospital in Entebbe. Even though surgery is free, transportation costs are often more than a family earns in a month—making life-saving care out of reach.

𝒀𝒐𝒖 𝒄𝒂𝒏 𝒄𝒉𝒂𝒏𝒈𝒆 𝒕𝒉𝒂𝒕.
A gift of $100 will provide transportation for one child and their caregiver to attend this year’s workshop and receive the care they need throughout the year.
If we can find 100 sponsors to give $100, every family in need will receive help.
Can you help us get to 100? Like, share and donate if you're able!
https://www.bladderexstrophy.com/one-act-of-kindness-can-change-everything/

08/07/2025

💛 At A-BE-C, we believe knowledge and community can change everything.

Whether you’re a parent with a new diagnosis, a young adult navigating life, or a supporter wanting to make a difference, you belong here.

Through conferences, resources, and peer support, we’re dedicated to helping every family feel informed, empowered, and never alone.

👉 Find support and join our community: www.bladderexstrophy.com

03/07/2025

💙 To all the amazing families and individuals in the bladder exstrophy community:
What has been the most valuable support or resource you’ve received on your journey?
💬 Share your thoughts in the comments and let others know they’re not alone!

01/07/2025

Kimberly Allen, Adult Provider Network Chair of our Adult Patient Advisory Council (APAC), recently had her Patient Perspective paper published in .

"Barriers to Finding Care for Adults With Bladder Exstrophy: A Patient Advocacy Perspective" is a wonderful article and we are so glad that Kim is getting well-deserved recognition of her dedication and expertise.

Kim is at the forefront of our APAC team’s efforts to develop resources that have never before existed for adult bladder exstrophy patients. Her groundbreaking work is not only transforming our community but also catching the attention of other organizations across the field.

We couldn’t be prouder of Kim and the impact she’s making! 💙
Read her paper here: https://loom.ly/DYlVcV8
American Urological Association

30/06/2025

Youth Rally is a one of a kind camp experience for youth living with conditions of the bowel and/or bladder system.
The 2025 Youth Rally will take place July 14th-19th in San Diego, CA.
Register now! https://youthrally.org/

27/06/2025

⚠️Attention ADULTS with exstrophy:
If you haven't already registered for our annual conference, maybe this last bit of info will convince you to join us!

On Friday afternoon, July 25th, before the start of the conference, patients 18 and older with BE, CE, epispadias, or related conditions are invited to join a conversation with fellow patients and members of A-BE-C's new Adult Patient Advisory Council, as we seek to close the gap in support for adult patients.

The agenda for this informative and engaging session include:
✅Overview of Adult Patient Advisory Council and Projects
✅Adult Patient Needs-Finding Strategies
✅Community-Building Discussion

Questions? Contact the Adult Patient Advisory Council at patient@bladderexstrophy.com

Register before the deadline closes tonight! ⏳
https://www.bladderexstrophy.com/2025-annual-conference/

27/06/2025

☀️Make it a summer to remember!☀️ Join us in Boston for the Annual Exstrophy Conference!
Don’t miss your chance to connect with the exstrophy community, hear from leading medical experts, and find the support, education, and inspiration you’ve been looking for. 💙

✅ Family meetups
✅ Expert panels
✅ Youth programs
✅ Lifelong memories

Let’s make this summer unforgettable — register before the deadline closes tonight! ⏳
https://loom.ly/OYe3KiI

24/06/2025

📣 Time is running out! Registration for the 2025 ABEC Conference closes THIS FRIDAY! ⏳

Make memories with your fellow BE families this summer in Boston.🔗 Register now before the deadline: https://www.bladderexstrophy.com/2025-annual-conference/