A new study in theย International Journal of Rare Diseases and Disordersย investigates how raising a child with a rare disease impacts parental quality of life and family functioning. This relationship was better understood using data collected from parents of children with Barth syndrome or congenital muscular dystrophy, as well as a control group with unaffected children.
The results showed that parents of children with rare diseases had significantly lower qualities of life and family functioning. This effect was proportional to the severity of disease. These findings provide a starting point for further research on the experiences of parents raising children with rare diseases, and point to the need of including support for parents and families in the holistic provision of health care services.
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