Advocacy & research

CanForum

Rare Cancers Australia brings together leading experts in Canberra each year to talk about the latest developments, trends and issues in cancer care.  At CanForum we discuss the big opportunities and challenges in providing the best care to people diagnosed with cancer, including hearing first-hand from patients about their experiences. CanForum 2024 stands poised as the catalyst for a ‘Rare Cancer Moonshot’, bringing together patients, leaders and experts in cancer for big thinking and problem solving on August 20th at Parliament House in Canberra. In our pursuit of the moon, let us unite, think expansively, be brave and go beyond. Join us to make a meaningful impact at CanForum 2024

We can do better. We will do better.

In Australia a rare cancer has fewer than 6 diagnoses per 100 000 people in the population. A less common cancer has fewer than 12 diagnoses per 100 000.  It is inevitable that more cancers will be considered ‘rare’ as new technology becomes integrated into our health care system. The emergence of genetic profiling technology is revealing more and more unique cancer subtypes. 

Therapies designed to target multiple rare cancer subtypes that share a common marker of disease are one of the many recent discoveries that promise to deliver more predictable outcomes for patients. 

Australia has historically been able to boast of having one of the best overall survival rates for cancer in the world but this has not extended to all cancers.  Rare Cancers Australia (RCA) takes a proactive stance to ensure Australians will have access to the cutting-edge best in class treatments and technologies that target rare cancers when they need them. 

We recognise that treatment delayed is treatment denied for cancer patients. 

RCA works to drive change and influence policy on behalf of cancer patients today and tomorrow. Our aim is to increase survivorship for patients with rare and less common cancers and highlight the opportunities for change that will ensure this becomes a reality.

We seek to humanise the health care system by acting with and on behalf of patients and their families, so their needs are met, and their perspectives are not lost in a highly structured and complex health system.  We highlight the need for ongoing research, investment in local infrastructure, access to clinical trials, and funded therapies and technologies.  We initiate policy discussion and take action to improve the lives and outcomes of all Australians living with a rare or less common cancer.  

RCA is currently working with government, clinicians, allied health workers, researchers and industry seeking change to outdated frameworks that underpin access to therapies and new technologies.

Our national health system is intrinsically geared towards coping with common diseases – yet progressive change is needed as the outdated frameworks can hinder progress and access to the best new technologies and therapies.

We know that the impact on the community from Rare Cancers is devastating- the gap is widening and the need to act is increasing with the discovery of more rare cancer sub-types and more families being touched by rare cancers.

A primary goal of RCA is to ensure the Federal and State governments understand the need for urgent reform and action around equity of access to clinical trials, approval and funding of therapies, radio-oncology,  early diagnosis, genetic profiling and detection of rare cancers. Our work involves constant representation in Canberra, participation in both Senate and Parliamentary enquiries and engaging stakeholders across the cancer continuum to unite with us to drive change.  We also raise awareness of the plight of individual patients and all rare cancer patients through mainstream and social media.

We are actively working to shift policy to ensure that we can give Australian RLC cancer patients affordable and timely access to the best in class advancing therapies and technologies in their own country as well as the support and care they need.

National Oncology Alliance

The National Oncology Alliance (NOA) is a cancer advocacy initiative with more than 100 members in four pillars: patients, patient groups, clinicians and the pharmaceutical industry.

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Reports & Submissions

We are determined to increase awareness, highlight the need for further research and initiate policy discussion.

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Contact your local MP

We believe one of the best ways to get your voice heard by government is to let your local MP know what issues are facing people in their own electorate. As your representative, it is their job to listen. By working together, we can make a difference.

Find out how