Our motto is Hereditary Health and Hope.
Our Goals, as outlined in our constitution, are:
- To actively encourage research into hereditary cancer syndromes
- To increase accessibility to research studies involving hereditary cancer, especially for people living in rural and regional Australia, via a website and/or app such as ClinTrials Refer Cancer Genetics
- To raise awareness of hereditary cancer syndromes, their causes and management
- To promote the prevention and/or control of cancer and other diseases caused by hereditary cancer syndromes by promoting the understanding and implementation of evidence-based risk management strategies.
- To disseminate information on hereditary cancer syndromes to medical practitioners, allied health workers and the general public, regardless of where they live in Australia, via workshops, seminars, newsletters, webinars and other media
We don’t carry out research ourselves, nor do we fund projects directly. There are already many great people doing this! Instead, we focus on making sure that all Australians can enrol in a research study if they want to. The biggest barrier to this is even knowing what trials exist. That’s where the ClinTrials Refer Cancer Genetics app and website database come in.
Importantly, we want the results of research to be known. This information can help individuals and families prevent cancer and is just as important as doing the research in the first place.
That’s why we run educational activities. These focus on how to identify, diagnose (sometimes via a genetic test) and manage hereditary cancer syndromes. We run workshops or education sessions, sometime by Teleconference, as well as producing written information. We want doctors and patients, regardless of where they live, to have access to information that can reduce cancer risk.
We don’t focus on any one syndrome. We focus on all cancer that may have an inherited component. Rather than replicating the work of others, we promote the activities of other organisations who have hereditary cancer as their main focus.
If you would like to organise a seminar or run a fundraising or awareness raising event in your local community, please contact us!
For information on how to obtain a genetic test or to have a genetic risk assessment, see the Sydney Cancer Genetics website (they run bulk billed consults for TeleHealth eligible patients throughout regional and rural Australia). You can download the Sydney Cancer Genetics Family History Questionnaire and discuss the completed form with your doctor.