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Understanding that children with bladder exstrophy are on a unique journey, the Department of Urology at Boston Children's Hospital has pioneered efforts in the support and psychosocial development of patients with bladder exstrophy. Founded at Boston Children's in 1992, our program serves as a place for families to learn and receive emotional support. It also gives parents and their children a place to meet others who have shared similar experiences.
The Exstrophy Support Group is a combined effort of the Department of Urology, the Center for Families, our surgical programs, nursing, child life specialists and Boston Children's volunteers.
We provide education and interaction:
The support group meets three to four times a year on a Saturday. The meetings are free for families and include breakfast and lunch. The children have scheduled activities and meet in an adjoining room to where the parents meet.
Recent support group topics:
Additionally, Boston Children's offers a family-to-family program, which connects families with experienced, trained volunteer families whose children have similar issues, including:
Read more about Boston Children's Hospital Bladder Exstrophy patients: Thomas' Story
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