UNCRC series

5, Dec 2019

Family stress due to demands of rare disease and lack of financial help

Living with rare disease can contribute to significant increased stress on families, and financial burden can further this stress. Financial hardship in the families of children with rare diseases may worsen an already difficult situation. The additional costs for these families can include specialised equipment, loss of income for care givers, and specialised medical or allied health services. Children with undiagnosed diseases may also have additional costs due to extra investigations and appointments. Costs may vary depending on the condition and the experience of the family. Costs may be hidden and present themselves slowly over childhood. Costs may also differ depending on whether the individual living with rare disease is using public or private services. Although some financial aid may be given through programmes such as the NDIS, families may still be in need of extra financial assistance.

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