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Rare Disease Survey

Posted on Thursday, 21 August 2014

This study is being conducted between 21 July and 1 September 2014, by the Office for Population Health Genomics, Department of Health WA in partnership with Rare Voices Australia (RVA), The Genetic and Rare Disease Network (GARDN), Genetic Support Network Victoria (GSNV) and the Association of Genetic Support Australasia (AGSA).

The purpose of this research study is to explore the healthcare experiences of adults living with a rare disease in Australia. This includes your experiences of: diagnosis, access to information, support and treatment; use of health services; patient registries, clinical trials and research.

We urge all members to take the time to complete this survey.

Survey Link: