Queensland Genomics Patient Toolkit
Queensland Genomics have produced a Genomics Information Toolkit for patients and families affected by rare disease. Information provided includes:
What genomics is
How it might help you or your family
Where Queenslanders can get testing
The different kinds of genetic tests that are available
As a patient or a family affected by rare disease, this toolkit has valuable information which can allow you to find support for you and your family. The toolkit walks you through relevant genetic concepts, the types of genetic tests available, locations of genetic services in Queensland, and the pathways patients commonly go through when receiving care.
The patient toolkit was suggested by Gary Hondow, a Consumer Advocate and member of the Queensland Genomics Community Advisory Group. Gary’s son, Dallas, is one of only twelve people in the world diagnosed with the rare genetic condition Van Maldergem Syndrome 2. The Patient Toolkit produced by Queensland Genomics aims to ensure families are given accurate information about genetic testing and the different genetics services across the state.
The toolkit is available languages other than English, including: Arabic, Persian (Farsi), Japanese, Vietnamese and Chinese.
Translated versions as well as other informational videos and resources are available on the Queensland Genomics website.