We try hard to keep our information up to date and accurate. Please let us know if a webpage we have a link to has been moved. Although we can’t list everyone, please let us know if you’ve found a particularly useful site.

Inherited Cancer Syndromes

See our Genes tab to learn more about inherited mutations and hereditary cancer syndromes.

General Information on Cancer:

Cancer Australia is the Australian Government's site on all aspects of cancer, for patients and doctors

eviQ has detailed Australia-specific information on germline testing and cancer risk management for doctors. It also has plain-language information for patients. The site is managed by the Australian Government's Cancer Institute.

Dr Hilda High is one of the experts who write and update the eviQ Australian Guidelines for genetic testing and risk management.

Support groups

There are heaps! They range from common cancers such as breast cancer to rare tumours. Some to choose from:

Pink Hope was set up to support young women affected by hereditary breast and ovarian cancer

Lynch Syndrome Australia provides information for people who have increased risk of bowel (colon) and uterine cancers due to a mutation in one of the 4 mismatch repair genes associated with Lynch syndrome

Pheo Para Troopers is a support group for people affected by the uncommon tumours called paragangliomas and pheochromocytomas.

Rare Cancers Australia is a charity whose purpose is to improve awareness, support and treatment of Australians with rare and less common cancers.

You'll find more information about specific support groups for inherited cancer syndromes on our Genes tab

General Genetics?

We only deal with Hereditary Cancer Syndromes (Cancer Genetics). If you have a more general genetics question (for example relating to cystic fibrosis, fragile X or inborn errors of metabolism, you'll need a Clinical Geneticist. Clinical geneticists, and genetic counsellors working in this area, are usually found working in clinics associated with a public hospital or community centre.

Like Sydney Cancer Genetics, many of these clinics offer Telehealth as well as face to face appointments. You'll find a state-based list of public clinics on the government's Centre for Genetics Education's Genetic Service Finder page and a similar list on the The Human Genetics Society of Australasia's Clinical Genetics Services page, under their Health Professional Resources tab.

Do you or your relatives live overseas?

For relatives in New Zealand, there are public services divided into 3 "hubs" based Wellington, Auckland and Christchurch.

For relatives that live further afield, there are usually local services. Your relative should speak with their doctor. If they are still having trouble accessing testing, contact us - we may have more information.