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机译:Providing Palliative Care in Rare Pediatric Diseases: A Case Series of Three Children with Congenital Disorder of Glycosylation
Seattle Childrens Hosp, Hosp Med & Pediat Adv Team, Seattle, WA USA;
Childrens Hosp Philadelphia, Neonatol, Philadelphia, PA 19104 USA;
Seattle Childrens Hosp, Pediat Intens Care & Pediat Adv Care Team, Seattle, WA USAChildrens Hosp Philadelphia, Pediat Adv Care Team, Philadelphia, PA 19104 USA;
congenital disorder of glycosylation; communication; pediatric palliative care; psychosocial issues; rare disease; uncertainty;