We believe that no Australian should have to go through their cancer journey alone.
Over the last 10 years, the team at Rare Cancers Australia has worked to improve the lives and health outcomes of Australians living with rare, less common and complex cancers – today and into the future.
Here are some examples of how we are making a difference.
Putting rare cancers on the map
National charity dedicated to all rare cancers
When RCA was founded in 2012, rare cancers were largely ignored, or in some cases, forgotten altogether. Today, every national conversation around cancer specifically refers to the needs of rare cancer patients.
Research into the prevalence of rare cancer
Our ‘Just a Little More Time’ (JLMT) research report in 2014 (and updated in 2016) provided the first evidence-based understanding of the state of research, diagnosis and treatment into rare and less common cancers in Australia at the time.
Raising awareness of rare cancer
Regular conversations across a range of channels continually increases awareness across Australia of what rare cancers are, their prevalence, and the challenges patients face.
We spread awareness through our online presence reaching more than 35,000 patients and supporters via social media, our Inside Rare newsletter and our website each month.
Influencing investment in rare cancer research
The Australian Government announced $63.4 million in grants for rare cancers and rare diseases research in 2022, influenced in part by RCA’s tireless work to ensure that this cancer group will never be forgotten or ignored again.
Providing personalised support
Australia’s first cancer navigators to specialise in the rare cancer journey
A diagnosis of rare cancer can thrust people into a world of helplessness, loneliness, and questions that are difficult to answer. Our Specialist Cancer Navigators understand that people are more than their cancer and have specific expertise in addressing the unique and complex challenges that a rare cancer diagnosis can bring.
Providing 360-degree personalised support
We actively support over 600 Australians at any one time living with a rare, less common or complex cancer, providing each patient with access to tailored clinical, emotional, peer and financial support from a dedicated Specialist Cancer Navigator.
Helping families with what matters to them
We support patients in need with emergency crisis funding for things like transport to attend appointments, accommodation when undergoing treatment, specialist medical bills, and day to day expenses associated with a diagnosis that can really add up.
Ensuring patient needs are heard and included
Host of the largest patient-focused cancer forum in the Asia-Pacific
RCA has hosted CanForum, one of the most significant cancer patient advocacy events in Australia, annually since 2014. CanForum presents distinguished local and international speakers to challenge our collective thinking, spark provocative and enlightening conversations on key issues confronting the Australian cancer community, and ultimately call for change.
Putting patients at the centre of planning
The ‘Vision 20-30: Building an Australian Cancer Futures Framework’ report was delivered in 2020 as part of the National Oncology Alliance (NOA) Project; a united group of stakeholders who collaborate on ambitious initiatives to improve cancer care in Australia. The report is an aspirational view of what could be achieved in cancer care over the next decade if the stakeholders across the cancer community committed to planning for the future. It was a contributing catalyst for the development of an Australian Cancer Plan, under the direction of Cancer Australia, which presents an opportunity to fully integrate person-centred care across all cancer types, regardless of rarity.
Improving the focus on person-centred cancer care
The ‘Rights and Roles of Australian Cancer Patients Report’ was delivered in 2021 as part of the NOA Project. The report recommended the urgent development of an ‘Australian Charter of Patient Rights in Cancer Care’; a more holistic patient navigator scheme to support cancer journeys; and formal mechanisms that recognise the roles of patients and learn from their experiences.
Elevating the patient voice
RCA has represented the voice of Australian rare cancer patients by making submissions to, and presenting at, five parliamentary inquiries. Two of these were initiated as a result of work that RCA was directly involved in.
Improving access to treatment
Providing a tangible solution for crippling out of pocket costs
RCA’s patient fundraising platform, the Patient Treatment Fund, has helped patients raise over $4 million in donations to help afford non-subsidised therapies and out of pocket costs, helping to soften the financial free-fall of a rare cancer diagnosis.
Driving change in access and affordability
We have worked tirelessly to present to the PBAC and the MSAC the need for funding for recognised treatments for rare and less common cancer patients. Since 2014, we have worked with rare cancer patients to influence the listing of over 100 urgent, lifesaving or life-extending medications on the PBS.
Improving access to potentially lifesaving medications
In 2022, we worked with Medicines Australia to launch the Medicines Access Portal (MAP), a single, secure online portal where clinicians can view the special access programs that pharmaceutical companies have available for cancer patients in Australia. This can help provide more patients with access to potentially lifesaving medications – improving options and renewing hope.
Improving options with clinical trials
Helping patients identify and access relevant options
RCA has partnered with Omico (the Australian Genomic Cancer Medicine Program) since inception to support the development of clinical trial options for all Australians living with cancer. We support rare cancer patients to access Molecular Screening and Therapeutics (MoST) clinical trials, whereby new treatment options are targeted (or personalised) to the specific molecular variations of the patient’s cancer, instead of their cancer type.
Expanding clinical trial options in Australia
A dramatic increase in Australian Government funding ($248 million over five years) in support of clinical trials for rare cancers and rare diseases was announced in 2018, influenced in part by our research reports (JLMT and Rare Solutions) and ongoing advocacy efforts.
Creating a community
Facilitating a national support network
Since mid-2020, RCA has established six facilitated cancer support groups with regular and growing attendance from patients and carers. The groups provide a safe, supportive space to share highs and lows, and build connections with peers.
Inspiring community awareness and action
Our largest annual fundraiser, the Mt Kosciusko (Kosi) Challenge, attracts over 500 participants each year. As well as increasing awareness of rare cancers, the event has raised more than $3 million to support our patient support team and provide emergency funding to patients in need.
Sharing expertise
Building stronger patient organisations, together
We developed the Pinnacle Program in 2018, a global peer-to-peer mentoring program to help support and empower patient organisations internationally. Pinnacle has over 300 members from more than 170 patient organisations who connect to share, teach and learn from each other.
Australia’s most comprehensive guide to navigating a rare cancer experience
We distilled 10 years of knowledge and experience in patient support into an RCA Patient Handbook. Designed to help fill a long-standing gap in cancer navigation in Australia, the handbook guides patients and their families through every stage of a rare cancer journey.
Driving meaningful change
Bringing people together to create a united voice
RCA initiated the National Oncology Alliance (NOA) Project in 2018, bringing the brightest minds in the cancer community together – public and private sectors, clinicians, industry leaders, patients, patient organisations and more – to approach government with a united voice on health system reform.
Influencing change in policy and funding
In 2017, RCA’s ‘Rare Solutions: A Time to Act’ report was presented to the Federal Government. The report addressed the challenges faced by Australian rare cancer patients on a day-to-day basis and provided some workable solutions to improve their lives.
The report, in conjunction with strategic advocacy efforts, engendered Cabinet-level support from the Health Minister, securing an initial $13 million dollar package for clinical trial funding, support for a new PBAC process for pan-tumour therapies, and a commitment for 20 per cent of the Medical Research Future Fund to be earmarked for research into rare conditions.