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B.E.S.T. ZOOM CHATS
We hold Monthly face to face Zoom Chats for those with Exstrophy and/or related conditions. These calls provide a safe and supportive space for people worldwide to connect, share experiences, ask questions, and have fun. It is a unique opportunity for many to meet others with similar conditions for the first time. We have a very welcoming community who love to get to know others with similar diagnoses and offer support in any way we can. Our monthly Zoom chats started in 2020 and have continued due to the positive feedback we have received from participants.
To get information about when our monthly support chat is held, and how to receive the zoom link, please message us on our instagram @b.e.supportteam
A-BE-C Adult Patient Advisory Council
As teenagers with exstrophy, we age out of the pediatric system at 18 years old, then learn firsthand the difficulties of managing our care across the adult healthcare system. Additionally, our condition can lead to urinary and sexual health issues as we age, which is often made more complex given our past surgical history and anatomy.
A-BE-C's Adult Patient Advisory Council (APAC) was formed to establish a community of exstrophy patients representing all stages of life, to share our healthcare experiences, goals, achievements, and challenges. Our council hosts quarterly focus groups, bringing the adult community together to identify insights and best practices. We host these forums around a specific topic, such as mental health, or finding a urologist, then discuss and learn from one another. Afterwards, our APAC team utilizes findings from the facilitated group discussions to steer the development of patient resources like our Adult Provider Directory. Additionally, we hold quarterly educational webinars presented by adult providers who are specialists in adult urology, maternal fetal medicine, male fertility, sexual health, and adolescent/young adult urology.
Watch the APAC page for dates and registration details for our upcoming spring Zoom events:
April 2026 Maximizing Healthy Pregnancies for Women with BE -- Pregnancy Management Educational Webinar (date and registration link coming soon)
May 2026 Adult Patient Focus Group (topic TBD--date, and registration link coming soon)
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