In 2014, an online survey was conducted to explore the healthcare experiences of Australian adults living with a rare disease. The survey was developed by the Western Australian Department of Health, together with Genetic Alliance Australia, the Genetic and Rare Disease Network, Genetic Support Network Victoria and Rare Voices Australia. In response to the survey invitation, 746 Australian adults living with a rare disease, or their carers, answered questions about their experiences of diagnosis, use of healthcare resources and involvement in research.
