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" ... Our foundation works with children in China who suffer from epidermolysis bullosa, known as EB. We host annual gatherings for parents of these children, and they provide feedback on the home-care guidance we give them. EB causes our patients’ skin to be extra fragile, so the children who live with these disorders have to be extremely careful while doing everyday activities. We use the parents’ comments on the written form to improve our recommendations and provide more well-rounded services. ... "