Thursday 26 June marks Rare Cancers Awareness Day, a powerful reminder of the critical challenges facing Australians diagnosed with rare and less common cancers – and the urgent need for greater awareness, early diagnosisthe process of identifying a disease based on signs and symptoms, patient history and medical test results and equitable access to care.
- Rare and less common cancers account for a quarter of cancera disease where abnormal cells split without control and spread to other nearby body tissue and/or organs diagnoses in Australia, yet cause more than one third of all cancer deaths – more than any single cancer type. Despite this, rare cancers are still being left behind with limited access to early diagnosis, screeningtesting for cancer or conditions that can lead to cancer before symptoms appear, also known as cancer screening and life-saving treatment
- This year’s campaign brings the lived experience into focus: The campaign features experiences of two patients, Noel and Jane, both young and navigating life after a rare cancer diagnosis.
Every 13 minutes, someone in Australia is diagnosed with a rare or less common cancer.
Recent national data shows more than 52,000 people in Australia died from cancer last year. While rare cancers make up about a quarter of all cancer diagnoses, they account for more than one third of cancer deaths – a disproportionate burden.
Rare Cancers Australia established the national Rare Cancers Awareness Day, held annually on 26 June, to shine a spotlight on Australia’s forgotten cancers. It’s a day to build knowledge, raise awareness, highlight the inequities facing people with rare cancers, and stand strong as a community to show our support.
For Noel Carmona, 37, from Branxton, the impact of rare cancer is all too real. In 2023, while raising his son and planning a wedding, Noel was diagnosed with Stage 4 Thymic Carcinomacancer arising from tissues that line organs, a rare cancer, after visiting his GP for a persistent cough.
“I was busy building my life – raising my son, planning a wedding, and working toward my goals,” Noel recalls.
“Hearing those words ‘you have cancer’ was gut-wrenching. My future shattered in seconds.”
Within a week, Noel began urgent treatment: surgerytreatment involving removal of cancerous tissue and/or tumours and a margin of healthy tissue around it to reduce recurrence, chemotherapya cancer treatment that uses drugs to kill or slow the growth of cancer cells, while minimising damage to healthy cells, and immunotherapya treatment that uses a person's immune system to fight cancer. With 12 rounds of immunotherapy costing over $60,000—not covered under the Pharmaceutical Benefits Scheme—he was forced to fundraise and access his wife’s superannuation to afford care.
He has since joined clinical trialsresearch studies performed to test new treatments, tests or procedures and evaluate their effectiveness on various diseases at an ICON Cancer Cente in Brisbane, followed by another centre in Sydney, hoping the new treatments will stabilise his tumoura tissue mass that forms from groups of unhealthy cells.
“I had no idea what rare cancer patients go through until I became one,” Noel said.
“I want everyone to at least be aware of rare. If something doesn’t feel right, go see your GP. It could save your life.”
Christine Cockburn, CEO of Rare Cancers Australia, says Rare Cancers Awareness Day is about more than statistics—it’s about the stories, the inequities, and the action needed to do better.
“This year’s theme is ‘Be Aware of Rare’. What many people don’t realise is that while these cancers are individually rare, together they make up a significant portion of the cancer burden,” said Ms Cockburn.
“Too often, rare cancer patients are overlooked or placed in the ‘too hard’ basket. As a result, they miss out on the care and support every Australian deserves. We must do better—and that starts with awareness.”
On this Rare Cancers Awareness Day, pledge your support for rare. Help amplify the voices of those living with rare cancers and demand a fairer system for all Australians. Visit https://give.rarecancers.org.au/rare-cancers-awareness-day for more information.