Parents’ experiences of living with, and caring for children, adolescents and young adults with Mucopolysaccharidosis (MPS)

Abstract excerpt

BACKGROUND: Many rare diseases of childhood are life-threatening and chronically debilitating, so living with a rare disease is an on-going challenge for patients and their families. MPS is one of a range of rare inherited metabolic disorders (IMDs) that come under category 3 of life-limiting conditions, where there is no curative treatment available at present. Although the study of rare diseases is increasingly...

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