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Providing Palliative Care in Rare Pediatric Diseases: A Case Series of Three Children with Congenital Disorder of Glycosylation

Journal title
Journal of palliative medicine
Publication year
2017
Author(s)
Trowbridge, A.; Stewart, M. T.; Rhee, E.; Hwang, J. M.
Pages
104-106
Volume
20
Number
1

Pediatric palliative care providers often care for children with rare, poorly understood diseases. In addition to grappling with a life-limiting diagnosis, families face complexity in decision making stemming from the prognostic uncertainty surrounding their child’s rare condition. We discuss several unique challenges, illustrated through case studies of three children who shared the rare diagnosis of congenital disorder of glycosylation.

Research abstracts