Frequently Asked Questions
About A-BE-C
Who is A-BE-C?
The Association for the Bladder Exstrophy Community (A-BE-C) is a group of exstrophy patients, family members, and medical professional volunteers who want to help improve patients’ lives.
What does A-BE-C do?
ABEC is involved in many initiatives to help improve care for bladder exstrophy in both the US and abroad. These projects include:
- Organization of the Annual International Conference
- Identification of Centers of Excellence
- Development of Educational Tools and Resources
- International Philanthropy
I wish I could do more to help. How can I get involved?
There are many ways you can get involved. Check our support page for local support groups, or form one of your own. You can also organize a fundraiser on behalf of A-BE-C in your local community. We are always looking for volunteers within the organization as well, so send us a message!
For Parents and Pediatric Patients
My child has just been diagnosed with Bladder Exstrophy. What does this mean?
The initial diagnosis may be overwhelming, but ABEC and all of our partners have dedicated significant amounts of time and effort to improve the quality of care available across the US and abroad. Check out our pages about bladder exstrophy to learn more about the condition and to develop a management plan that works for you. A great place to start is our “I’m New Here” page!
How do I find good care for my child?
We recommend looking at our list of Centers of Excellence. We work with pediatric urologists and their support teams at hospitals across the country and around the world to identify which programs have an established track record of providing high quality care for exstrophy patients.
If none of these hospitals are an option, you can send us an email and we will try our best to connect you with additional options.
What resources does ABEC have for parents?
We are constantly striving to add new tools and resources to our website. Educational materials can be found in
In addition to these resources, we hope you browse the other pages on our website as you may find other helpful areas of support. If you have questions or would like to see the creation of new materials, please send us your suggestions.
How do I prepare for an appointment with a specialist?
This will vary depending on what point you are at. The two main things to prepare are previous medical records and a list of any current concerns or questions you might need answered during the visit.
- If your child has been prenatally diagnosed, and you are going to visit a pediatric urologist for the first time, prepare by familiarizing yourself with exstrophy using this website or information from any of our partners (such as the Centers of Excellence).
- If changing to a new specialist, you may also want to come up with a list of questions to understand how they typically treat other exstrophy patients and if their priorities and concerns align with yours.
For Adult Patients
I am an adult with exstrophy. Do you have resources available to adults as well as children?
We are working to build our resources for adults with exstrophy, including adding resources regarding transitional care. But here are a few tips you may find helpful.
- There is a big community out there for Exstrophy, Ostomies, kidney failure, etc. both online and in person. In all of these aspects, you are not alone and support is available.
- There are online support groups as well as in-person conferences and meetups depending on what you are interested in. Each above-mentioned organization (including our own!) has great conferences. We highly recommend you attend so that you can meet others and also network with medical professionals who are experts in the care of these rare conditions.
- Connect with the Adult Patient Advisory Council to join a focus group and lend your voice to help create support and resources for adult patients
How do I transition from my pediatric urologist to an adult healthcare provider?
Transitioning to new doctors – primary care physicians or specialists – of any type can come with difficulties. It is important to have a plan in place to maintain consistent care. The first step is to talk with your pediatric providers to understand their policies and see what local resources are available as many pediatric clinics have a network of adult providers that they refer to and some have close connections with them to pass off management. We are currently developing new tools to help make this process easier, but until those are available, there are online generic resources (like gottransition.org) that may provide a helpful framework to get started.
How can I find an adult urologist who treats exstrophy?
We are actively establishing a database of specialists across the US who have a track record of providing quality care for exstrophy patients. Until this list is posted, please reach out to [email protected] if you have any questions. It can also be beneficial to directly contact any pediatric providers you know to ask for recommendations.
How do I become more involved with the exstrophy community? Are there other patients I can talk to?
Yes! We have some links to online support groups, but here are some other resources:
- Facebook groups
- Local support groups
- Reach out to [email protected]
- International conferences
For Healthcare Providers
How can I become more familiar with treating bladder exstrophy?
We recommend contacting any of our listed Centers of Excellence for direct assistance with providing medical care for exstrophy patients. We would be happy to provide introductions if that makes the process easier. These institutions (and many others such as the Mayo Clinic) have generic informational pages about bladder exstrophy as well.
How do institutions become Centers of Excellence for Bladder Exstrophy?
Institutions are welcome to apply to become a designated Center of Excellence. We have a network of specialists involved with our medical advisory board that help evaluate each program across a range of major criteria that we have identified is critical to achieving successful outcomes for exstrophy patients.
How do I join the adult provider network?
We would love to have more providers join our network if they would like to help. Please reach out to [email protected] to indicate your interest and we will find a time to meet.
How can I help improve bladder exstrophy care in the US or abroad?
There are several ways to help improve care.
- Learn more about bladder exstrophy. It is a rare, complex condition; thus many patients struggle to find specialists comfortable enough to accept them into their clinic.
- Help build our networks. In addition to the medical management side of exstrophy we also hope to improve the mental and social well-being of each patient by supporting our communities and providing opportunities for peer-to-peer connection. We do this through our Adult Patient Advocacy Council, in-person conferences, and more. Please encourage your patients to engage with our community.
- We also work to support initiatives that are offering high quality medical treatment for people that live abroad. Our outreach current extends to programs in Uganda and India. Please reach out to us if you would be interested in getting involved with those programs.
How does A-BE-C help providers treat patients more effectively?
We hope to aid providers by helping them connect with the established community. Many of our clinical partners have played pivotal roles in setting gold standards to diagnose, treat, and manage exstrophy. By bringing them together, virtually and in-person, we are working to expand our collective understanding of the condition and make it more accessible to the patients, families, and physicians who need it the most.