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Australian Rare Disease Survey for Adults

Are you aged 18 years or older and living with a rare disease in Australia?

You are invited to participate in The Australian Rare Diseases Survey for Adults.  This study is being conducted between 21 July 2014 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.

Rare Voices Australia invites you to participate in the survey if you are:

  • Aged 18 years or older and living with a rare disease in Australia, or
  • A carer or paid support worker is permitted to complete the survey if the person aged 18 years or older living with a rare disease does not have the intellectual and/or physical capability to complete the survey.
The responses you provide will be very helpful for Rare Voices Australia to obtain a comprehensive picture of the health care experiences of people living with rare diseases in Australia.  It will provide important information that can be used to advocate for rare diseases, plan for rare diseases at a state and national level and to develop evidence based government policy.

To participate in this study, please click on the link below to the online survey.  The survey is anonymous and takes about 20-25 minutes to complete.  Please complete the survey by 5pm (AEST) on Monday, 1 September 2014.

Survey link:

If you know someone else who might want to participate in the survey, please send them the link to the online survey.

Thank you for participating in this study.  All responses to the survey will be collated together.  A report will be produced of the survey findings.  If you would like a copy of this report when it is published, or have any questions about the survey, please contact Caron Molster from the Office of Population Health Genomics, Department of Health WA on (08) 9222 6871 or email

To find out more about the survey or Rare Voices Australia, visit