Rare cancers

Rare cancers

Cancer researcher in a clinic
Rare cancers account for more than 20 per cent of cancers diagnosed in Australia, and 30 per cent of cancer-related deaths – more than any single cancer type. Our researchers are developing new strategies to select the best treatments for people diagnosed with rare cancers.

Rare cancer research at WEHI

Our researchers aim to improve the healthcare available for people with rare cancers. A major focus is to use information contained in the genomes of rare cancers to match them with existing anti-cancer treatments.

Our rare cancer research efforts are aided by our participation in:

We are also a founding partner in CART-WHEEL (Centre for Analysis of Rare Tumours), an online network developed by BioGrid Australia, which allows people with rare cancers to contribute their personal data to research studies.

What are rare cancers?

Cancer is an uncontrolled growth of cells. A cancer type is considered rare if it affects fewer than 6 people per year per population of 100,000 people.

Rare cancers can arise in many different parts of the body, from different types of cells. Some may originate in a part of the body, such as the breast, where other more common cancer types arise, but from a different cell type to the more common cancer.

Rare Cancers Australia provides information about distinct types of rare cancers.

Burden of rare cancers

Although few people may have a particular type of rare cancer, altogether there are many types of rare cancer. When considered together, rare cancers are a significant health burden in Australia and globally.

Twenty per cent of cancers diagnosed in Australia are classified as a rare cancer, but rare cancers cause thirty per cent of cancer deaths annually. People with rare cancers are more likely to die from their disease than people with more common cancers.

The outlook for people with rare cancers is not as good as that for people with more common cancers because:

Rare cancers are often diagnosed at late, more advanced and harder to treat stages, because health professionals may not recognise the symptoms of a rare cancer. Treatments for many rare cancers have not advanced at the same pace as treatments for more common cancers in recent years.

Improving treatments for rare cancers

Different types of rare cancers respond to different treatments, but effective treatment strategies have not been developed for many rare cancers. This is because:

  • Research that could improve the outlook for individual rare cancer types attracts less interest and funding than research into more common cancer types.
  • Researchers have limited access to clinical samples of a particular rare cancer type, restricting their ability to discover how the cancer develops and responds to treatment.
  • Clinical trials of new treatments for rare cancers are often difficult to conduct as most current strategies to test treatments rely on access to large groups of patients who all have a similar condition.
  • The systems for approving a medication for treating a particular cancer are often not flexible enough to enable approval of new treatments for a small group of patients. Our clinical translation page explains more about how medications are moved from clinical trials to approvals.

Our involvement in international rare cancer collaborations gives our researchers access to samples of rare cancers from around the world. This boosts the strength of our research into these cancers.

An important aspect of our research is to use information from the genome of rare cancer samples to recommend a treatment using existing anti-cancer medications. This strategy incorporates knowledge gained in treating more common cancers that may show similar genetic changes to a rare cancer sample.

Once a treatment for a person with a rare cancer is devised, our researchers monitor the success of the treatment, to guide future recommendations.

Further information and support for people with rare cancers and their families are available from:


Professor Clare Scott

Professor Clare Scott AM
Joint Division Head

Professor Tony Papenfuss

Tony Papenfuss
Laboratory Head; Leader, Computational Biology Theme
Super Content: 
Doctor talking to a patient (obscured) in a clinic

A $3 million gift from the Stafford Fox Medical Research Foundation will ensure that Australians with rare cancers benefit from new approaches to diagnosis and treatment.

Illuminating rare cancers forum logo

What can we do to ensure people with rare cancers are not left behind? Our panel of experts discussed this question at a public forum in 2014.

Red and white DNA strands

Genetic sequencing shows promise for matching people with rare cancers to the right treatments, according to a new clinical trial.

Researcher standing with arms folded looking at camera, standing in front of computer servers

Researchers have uncovered how massive DNA molecules that appear in some rare cancers form, explaining how the tumours 'steal' and amplify genes to ensure their own survival.

Scientist looking at image

How can patients suffering from rare cancers benefit from advances in treatments for other cancers?