INCUBATOR GRANT PROJECT

Families living with rare chronic disease: health related out-of-pocket expenses

Incubator Grants

$9,150 AUD

01/01/2015 → 31/12/2015

Carolyn Sue

Researcher

A/Prof Yvonne Zuryinski

Research Institution

Westmead Children’s Hospital

Project Name

Families living with rare chronic disease: health related out-of-pocket expenses

Project Details

A/Prof Zuryinski is currently the deputy director of the Australian Paediatric Surveillance Unit (APSU), located at Westmead Children’s Hospital. She is a senior researcher specialising in rare diseases and their social impacts. Along with her team, A/Prof Zuryinski will be surveying families with a direct connection to mitochondrial disease or tuberous sclerosis to determine the out-of-pocket expenses these families are burdened with. These surveys will be completed over a six month period. By examining the results, A/Prof Zuryinski’s team hope to determine how the family unit is affected by these expenses. There will also be a direct benefit to the families connected to the Mito Foundation, as the researchers will be providing the families with the tools to track their health expenses and print their own data.

This Incubator Grant was established in a partnership between the Mito Foundation and Tuberous Sclerosis Australia (TSA).