Recognising cancer researchers on Rare Disease Day

28 February 2023 – Rare Disease Day

This Rare Disease Day Can Too Foundation acknowledge its alums of 24 past and present researchers who contribute to increasing our understanding of rare and less common cancers.

What is a rare or less common cancer?

Cancer is considered rare if it affects less than six people per 100,000, while a less common cancer affects less than 12 people per 100,000, according to the Cancer Council.

In 2022, an estimated 49,000 Australians were diagnosed with a rare or less common cancer, based on data from the Australian Institute of Health and Welfare. Pause to consider – that’s over 130 people every day in Australia being told they have a rare or less common form of cancer.

Survival rates are often lower in rare and less common cancers as they can be difficult to diagnose – and once diagnosed, are often at an advanced stage, making them more challenging to treat.

Rare and less common cancers studied by our researchers

Research is an important component in helping to improve the outcomes of people with cancer. Can Too support research into all cancer types; however, the following are examples of rare and less common cancers that our researchers have investigated:

Neuroblastoma (1 case per 100,000 people)

• Most common in children and arises in the developing nerve cells of the sympathetic nervous system, with tumours developing from the neck to the pelvis.
• Approximately 40 children are diagnosed with neuroblastoma every year in Australia.
• Can Too supported neuroblastoma researchers: Dr Belamy Cheung (2022), Dr Tao Liu (2018, 2007), and Dr Loretta Lau (2011). ??

?Primary bone cancer (1 case per 100,000 people)

• Primary bone cancer, or bone sarcoma, starts in the bone. As the tumour grows, the cancer cells can damage and destroy the bone.
• Primary bone cancer is distinct from secondary (metastatic) bone cancer, which spreads to the bone from other parts of the body. ?
• Approximately 300 people are diagnosed with primary bone cancer every year in Australia.
• Can Too supported primary bone cancer researchers: Professor Neil Watkins (2017, 2016), Dr Emma Baker (2013), and Dr Paul Neilsen (2013).

Acute myeloid leukaemia (4 cases per 100,000 people)

• A type of blood cancer that arises in specific white blood cells, known as myeloid cells. It appears suddenly and grows quickly.
• An estimated 1,100 people were diagnosed with acute myeloid leukaemia in Australia last year.
• Can Too supported acute myeloid leukaemia researcher: Associate Professor Jason Wong (2015, 2014).

Oesophageal cancer (5 cases per 100,000 people)

• ?Arises in the cells that line the oesophagus, the long tube connecting the mouth to the stomach.
• ?An estimated 1,700 people were diagnosed with oesophageal cancer in Australia last year.
• ?Can Too supported oesophageal researcher: Dr Smitha Georgy (2013). ?

Brain cancer (6 cases per 100,000 people)

• There are many types of brain cancer; the most common include astrocytomas, oligodendrogliomas, glioblastomas and mixed gliomas.
• An estimated 1,900 people were diagnosed with brain cancer in Australia last year.
• Can Too supported brain cancer researchers: Dr Holly Holliday (2023), Professor David Ziegler (2022, 2021), Dr Marlene Hao (2021), Dr Rochelle D’Souza (2017), Dr Jacqueline Donoghue (2012), Dr Justin Lees (2012), and Dr Gough Au (2010).

Soft tissue sarcoma (7 cases per 100,000 people)

• ?A type of cancer that forms in the soft connective tissues of the body, such as fat, muscle, blood vessels, nerves, tendons, cartilage, and lymph vessels.?
• An estimated 2,100 people were diagnosed with soft tissue sarcoma in Australia last year.
• Can Too supported soft tissue sarcoma researcher: Dr Emmy Fleuren (2021, 2020).

Multiple myeloma (8 cases per 100,000 people)

• A type of blood cancer that develops in specific white blood cells, known as plasma cells.
• An estimated 2,600 people were diagnosed with multiple myeloma in Australia last year.
• Can Too supported multiple myeloma researchers: Dr Justin Wong (2019) and Dr Andy Hsu (2012).

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Stomach cancer (8 cases per 100,000 people)

• Develops as a result of abnormal growth of cells within the wall of the stomach. There are four main types: gastric adenocarcinoma, gastrointestinal stromal tumours, lymphomas, and carcinoid tumours.
• An estimated 2,500 people were diagnosed with stomach cancer in Australia last year.?
• Can Too supported stomach cancer researcher: Dr Natalia Castano-Rodriguez (2017).

Ovarian cancer (11 cases per 100,000 females)

Arises from the abnormal growth of cells within one or both ovaries and is one of the deadliest types of female cancer.

An estimated 1,800 women were diagnosed with ovarian cancer in Australia last year.

Can Too supported ovarian cancer researchers: Professor Susan Ramus (2021, 2018), Associate Professor Tracy O’Mara (2019), Dr Rachael Rutkowski (2012), Professor Caroline Ford (2011), and Dr Viive Howell (2008).

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Further information on Can Too funded researchers and rare and less common cancers is available at:

Can Too: cantoo.org.au

Cancer Council Australia: cancer.org.au

Rare Cancers Australia: rarecancers.org.au

Cancer Australia: canceraustralia.gov.au

Data obtained from:

Australian Institute of Health and Welfare: aihw.gov.au

Trish Dwight, PhD , Holly Holliday , Emmy Fleuren