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Cystic fibrosis (CF) is one of the most common life-limiting genetic conditions. Ellen Bolton (not her real name) is a teenager with one of the rarer presentations of CF. This case study explores the experiences of Ellen and her family. It discusses…

Background: Globally, pioneers in children's palliative care influenced this speciality's development through individual initiatives leading to diverse models of care. Children's and young adults' hospices have now been established around the world.…
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