Rare Cancers Australia

Rare Cancers Australia We work to improve the lives & health outcomes of Australians living with rare or less common cancers

Rare Cancers Australia (RCA) is a leading for-impact charity that works to improve the lives and health outcomes of Australian patients, carers and families affected by a rare or less common cancer diagnosis. We do this through:

• Patient support - we provide personalised practical, emotional and financial assistance to the rare cancer patients, carers and families of today. We help patients acc

ess specialists, treatments and research opportunities. We also deliver support groups, connect people with services and assist with fundraising.

• Advocacy - we drive meaningful change for the rare cancer patients, carers and families of today and tomorrow. We help rare cancer patients gain access to the treatments they need, and develop strong partnerships and work to influence policy in order to increase survivorship rates and patient participation in decision-making at all levels. For more information visit: www.rarecancers.org.au

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Welcome to Rare Cancers Australia’s page. This is a space where we share information, resources, advice and experiences from in and around the rare and less common cancer community. We welcome all followers and visitors and encourage discussion and engagement with the content being shared, but we do ask that posts by users are relevant and respectful. Content on this page is monitored by Rare Cancers Australia staff, and we reserve the right to remove posts that are:

• Offensive, divisive, aggressive, abusive, defamatory or intolerant

• Fraudulent, deceptive, misleading or unlawful

• “Trolling” in nature, harass others or deliberately derail discussions

• Off-topic or related to an irrelevant business

• In violation of the intellectual property right of another individual or entity

• Spamming in nature

• Considered commercial solicitation including the solicitation of donations

We also ask that you please adhere to the Facebook Community Standards: https://www.facebook.com/communitystandards

If you have any questions or concerns, please private message us. Thank you for your part in ensuring a safe and respectful community for all.

When Karen felt exhausted and ‘not herself’, she assumed she was low in iron. After a routine blood test, she was told t...
23/08/2026

When Karen felt exhausted and ‘not herself’, she assumed she was low in iron. After a routine blood test, she was told to present to hospital immediately. Within days, the 54-year-old wife, mother and grandmother was diagnosed with Acute Lymphoblastic Leukaemia (ALL).

Over the past year, Karen has faced intensive chemotherapy, bone marrow biopsies, lumbar punctures, a bone marrow transplant, and ongoing complications. Although she's now home, her treatment journey is far from over.

Several times a week, Karen and her husband travel a 130-kilometre round trip for hospital appointments, while the costs of fuel, parking, medication and everyday household bills continue to grow. Unable to work, the financial pressure has become another burden for her family.

Your support can help ease that pressure so Karen can focus on what matters most – her recovery and time with her loved ones. To show your support, please share her story and donate here: https://bit.ly/4fudQpJ

That’s a wrap on another year of incredible support from the Corporate Clash in Macarthur.Today, the fighters who took p...
21/08/2026

That’s a wrap on another year of incredible support from the Corporate Clash in Macarthur.

Today, the fighters who took part in this year’s event gathered to reflect on how far they’ve come, and their incredible achievements in raising more than $357,000 for charity – including more than $165,000 for Rare Cancers Australia!

Funds raised through the Corporate Clash help stock our patient care packs, which are filled with carefully selected items to make a cancer diagnosis a little more comfortable and supported.

These packs are sent to people with rare and less common cancers, as well as to mums and children through our Mummy’s Wish program.

Each pack includes information and resources, comfort items, and special personalised touches to show people diagnosed with cancer they are not alone.

Thank you to everyone involved in the Corporate Clash for your continued support, your fundraising efforts, and your bravery stepping into the boxing ring!

The story of rare cancers in Australia is changing – but not fast enough. People with rare cancers continue to face dela...
19/08/2026

The story of rare cancers in Australia is changing – but not fast enough. People with rare cancers continue to face delayed diagnoses, limited options and isolation.

In the final session of CanForum26 on Wednesday 9 September, we’ll confront the parts of the story that still need to change, and consider what the next chapter should look like.

Patient advocate Celestino Carosella will share his experiences, being diagnosed with a one-in-a-million rare cancer called adrenocortical carcinoma, while his daughter, Jasmine, was already being treated for another rare cancer.

We’ll also hear a series of innovative solutions about what the next chapter of rare cancer care could look like.

Associate Professor Malinda Itchins, a thoracic medical oncologist at Royal North Shore Hospital and Chris O’Brien Lifehouse, will host a panel of experts who will share different perspectives on how they’d rewrite the story:

🔹 Professor David Thomas, Chief Science and Strategy Officer at Omico
🔹 Dr Elizabeth Connolly, medical oncologist at Peter MacCallum Cancer Centre and Oncology Research Fellow at ProCan, Children’s Medical Research Institute
🔹 Associate Professor Jia (Jenny) Liu, Translational Lead Early Phase Drug Development at the Kinghorn Cancer Centre
🔹 Dr Holly Barker, Senior Research Scientist at WEHI.

Learn more about CanForum26 and check out the full program at: https://bit.ly/3ThHnvZ

If you’ve been diagnosed with a rare or less common cancer, you could be feeling like nobody really understands your exp...
18/08/2026

If you’ve been diagnosed with a rare or less common cancer, you could be feeling like nobody really understands your experience.

But we have communities of people who really get it – because they’re on a similar path.

Each of our support groups brings together people from across the country who are looking for support, information, and connection during their cancer experience.

Some have recently been diagnosed; others have been living with cancer for some time. Together, along with a Specialist Cancer Navigator, they provide a space to learn, listen, share and connect.

To register for an upcoming support group, visit: https://bit.ly/3HlFUPh

Joel, 59, from Tasmania, has faced four very difficult years; starting with a heart attack, and more recently, a diagnos...
16/08/2026

Joel, 59, from Tasmania, has faced four very difficult years; starting with a heart attack, and more recently, a diagnosis of chondrosarcoma – a rare bone cancer affecting his pelvis.

Joel travelled to Melbourne in 2024 for major surgery to remove the cancer, including part of his pelvic bone. Despite significant changes to his mobility, energy and ability to do the things he loves, Joel was working hard to rebuild his strength.

Now, the cancer has returned. Joel has had to stop working and undergo another major surgery, with mounting financial pressure and a long road to recovery ahead.

Any donation you can make will help cover travel, accommodation, medical and living expenses, and the loss of income while Joel recovers. To read more or donate, visit: https://bit.ly/45ZduDv

15/08/2026

Rare and less common cancers often have vague symptoms, or affect people who are otherwise healthy.

For Jess, that meant when she developed a string of new symptoms, she was told she was “too young” for it to be anything to worry about.

Then she was diagnosed with a rare form of ovarian cancer. She shared some of her experience to help shine a light on rare cancers in the lead-up to Rare Cancers Awareness Day in June.

Behind every cancer experience is a cancer nurse providing expert care, trusted guidance and compassionate support. For ...
13/08/2026

Behind every cancer experience is a cancer nurse providing expert care, trusted guidance and compassionate support.

For people affected by rare cancers, that support can be especially meaningful. Cancer nurses help navigate uncertainty, advocate for patients, provide specialist knowledge, explore clinical trials or genomic testing, connect to specialist support services, and offer reassurance at every stage.

Today, we’re celebrating their contribution on Cancer Nurses Day!

It's a day to recognise that cancer nurses are:
💜 strong
💜 skilled
💜 specialised.

To the cancer nurses caring for our rare community – thank you for the difference you are making.

Record numbers of people are living with rare cancer. But while we have opportunities for bold innovation, the funding, ...
12/08/2026

Record numbers of people are living with rare cancer.

But while we have opportunities for bold innovation, the funding, research investment and access have not kept pace.

At CanForum26, on Wednesday 9 September, we’ll learn more about how Australia can lead globally, matching the urgency and complexity of rare cancers, including childhood cancers.

More than a funding conversation, this is a debate about how to get the best value out of investment in cancer care, and the price of more time.

We’ll hear from Billie Tuckerman, whose family had to travel overseas to access proton beam therapy when her daughter, Evelyn, was diagnosed with Ewing sarcoma at just seven months old.

Professor Louis Chesler, Executive Director at the Children's Cancer Institute, will draw on his experience in the US and UK and his background as a clinician researcher and paediatric oncologist, to share how we can bridge the gap between discovery and clinical implementation.

The second session of the day will close with a discussion about health as an investment – exploring different perspectives on what it means to invest well for patients, for society, and for the economy.

Learn more about how we can rewrite access to innovation in cancer care. Register to join us at CanForum26 at: https://bit.ly/3ThHnvZ

Supportive care can have a profound impact on the way people experience cancer. Supportive care includes evidence-based,...
11/08/2026

Supportive care can have a profound impact on the way people experience cancer.

Supportive care includes evidence-based, multidisciplinary practices and therapies that can help people tolerate treatment and reduce complications.

SAHMRI has recently published a paper addressing some of the common myths around supportive care.

Alongside clinical care, supportive care can help manage side effects, maintain quality of life, and reduce hospital admissions and emergency presentations.

Supportive care can offer benefits at any point of a person’s cancer experience, from diagnosis and throughout treatment and survivorship.

Read more at: https://bit.ly/4g6FEBf

If you’re interested in learning more about supportive care and complementary therapies, check out our Jem Program at: www.jemma.org.au

Appendix cancer is a rare cancer with several different types, each behaving differently and requiring personalised care...
10/08/2026

Appendix cancer is a rare cancer with several different types, each behaving differently and requiring personalised care.

🔹neuroendocrine tumours (NETs) are the most common type, often found incidentally during surgery for appendicitis
🔹mucinous adenocarcinomas produce a jelly-like substance that can spread to other parts of the body
🔹goblet cell carcinomas (GCCs) tend to be more aggressive, with features of both NETs and adenocarcinoma cells
🔹other rare types include pseudomyxoma peritonei (PMP), colonic-type adenocarcinoma, signet ring cell adenocarcinoma, and mucinous neoplasms (LAMN and HAMN).

To learn more about appendix cancer and treatment, visit our KnowledgeBase at: https://bit.ly/4z6FDGf

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Suite 122, Springetts Arcade B**g B**g Street
Bowral, NSW
2576

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Wednesday 9am - 5pm
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Friday 9am - 5pm

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