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Health-related out-of-pocket expenses for children living with rare diseases

Some time ago Tuberous Sclerosis Australia (TSA) and Mito Foundation came together to support research examining costs incurred by families in Australia with children living with chronic and complex diseases.  13 families – 10 with TSC – generously gave their time to complete surveys over 6 months, measuring the out-of-pocket costs associated with providing care to a child.  While many of you may be very familiar with out-of-pocket expenses from your own experience, it may interest you to know that families with TSC or mitochondrial disease had out-of-pocket expenses more than double those estimated in the general population in Australia. This burden is often increased as one or both parents stop paid work to become primary care givers.  To get access to the full study please click here.