The reality of rare and less common cancer
Rare and less common cancers encompass a broad and diverse group of cancers. Rare cancers are defined as a type of cancer with less than 6 diagnoses per 100,000 people per year. There are hundreds of types of rare cancers, including sarcomas, reproductive cancers, head and neck, and many types of blood cancers. While less common cancers have an incidence of between 6 and 12 diagnoses per 100,000 people, including brain, liver, stomach, and ovarian cancers.
A cancer is rare or less common if:
- It is very unusual and seen in very few people.
- You are much younger or older than people who are typically diagnosed with it.
- It affects a child.
- It is a common cancer in an unexpected location, such as a melanoma that started in the eye, or breast cancer in men.
Although each type affects only a small number of individuals, together they form a substantial portion of the cancer burden. Collectively, these cancers represent approximately one-quarter of all cancer diagnoses in Australia and are responsible for one-third of cancer-related deaths. Despite this, rare and less common cancers remain significantly under-researched, and those diagnosed often experience delayed detection, limited treatment options, a lack of accessible information and support, and poorer survival outcomes.
Our opportunity to change the story
To address these challenges, Cancer Australia has engaged Rare Cancers Australia to lead the development of the first Optimal Care Pathway (OCP) for People with Rare and Less Common Cancers.
We want to hear from you about what should be included in an OCP for people with rare and less common cancers.
This targeted consultation is your opportunity to contribute to shaping the OCP by identifying key priorities and ensuring it meets the needs of patients, clinicians, and the broader healthcare system.
This is an exciting opportunity to contribute to a new national standard of care and drive meaningful change for people with rare and less common cancers. Your experience and expertise are greatly valued, and we thank you for time and contributions.
How you can contribute
There are two ways you can help shape the OCP:
- Complete a survey about your views and experience (10-15 minutes).
- Register for a webinar to share your thoughts directly with the project team.
The links for each are below. Simply choose the category most relevant to you.
Person with rare or less common cancer
Carer of person with rare or less common cancer
Health or social care professional
Policy professional, researcher or other
Public consultation on draft OCP resources will be open later in 2025. Anyone impacted by rare or less common cancer will be encouraged to share their feedback.