The A-BE-C Adult Patient Advisory Council (APAC) was established to ensure that the voices and experiences of adults living with bladder exstrophy are represented in the organization’s work.
Formed in 2024, the council serves as a vital connection between A-BE-C and the adult patient community, helping to shape resources, advocacy efforts, and long-term care initiatives.
Bladder exstrophy is a lifelong condition, and the needs of adults can differ significantly from those of children. By incorporating lived experience, A-BE-C ensures that its work reflects the full patient journey.
The Adult Patient Advisory Council helps A-BE-C:
understand the long-term experiences of patients
identify gaps in care and support
improve resources for adult care and transition
advocate for better awareness and policy
One of the greatest challenges for adult patients is finding providers familiar with bladder exstrophy.
A-BE-C is building and expanding a directory of urologists and specialists who are experienced in treating adult patients. If you would like to suggest a provider, please contact: patient@bladderexstrophy.com
Transitioning from pediatric to adult care can be complex.
The council is developing resources to help patients navigate this transition and find appropriate long-term care. In the meantime, you may find helpful guidance at: www.GotTransition.org
Much of the research on bladder exstrophy is highly technical.
The council is working to make research more accessible by providing simplified summaries and increasing patient involvement in ongoing studies.
Bladder exstrophy is not currently recognized as a federally defined disability in the United States.
A-B-E-C and the APAC are working with organizations such as the American Urological Association to improve awareness, advocacy, and healthcare policy.
The Adult Patient Advisory Council values input from:
A-B-E-C gathers insights through:
You can get involved by signing up for the A-B-E-C newsletter and opting in to participate.
In addition to the founding council members, A-B-E-C recognizes the contributions of individuals who have helped shape and establish the Adult Patient Advisory Council.
If you have questions or would like to contribute ideas for future initiatives, please reach out using the contact form below.
A member of the A-B-E-C team will be in touch.
