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 access 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.

Caring for someone with cancer can be an enormous responsibility, often taken on without warning.When someone is diagnos...
12/10/2026

Caring for someone with cancer can be an enormous responsibility, often taken on without warning.

When someone is diagnosed with a rare or less common cancer, family members and friends can suddenly find themselves taking on a complex caring role – navigating appointments, searching for information, managing day-to-day tasks, and trying to find a path through the uncertainty.

It can be deeply rewarding, but it can also be exhausting and overwhelming. Carers need care and support, too.

This year’s National Carers Week theme, Care for a carer: Making carers visible, is a reminder to recognise the people behind the caring role.

At RCA, we acknowledge and celebrate the significant contribution of carers in our rare cancer community, and are also here to support them – including offering a dedicated Carers Support Group.

Learn more about our support for carers: https://bit.ly/3W3GA2R

After initially visiting his GP for neck pain, Paul was diagnosed with stage 4 pseudomyxoma peritonei (PMP), a rare type...
10/10/2026

After initially visiting his GP for neck pain, Paul was diagnosed with stage 4 pseudomyxoma peritonei (PMP), a rare type of appendix cancer that had spread throughout his abdomen.

After chemotherapy, Paul travelled from WA to Sydney for a gruelling 13.5-hour operation, which involved removing several organs. When the tumours continued to grow, he underwent a second 13-hour operation, spending 48 days in hospital.

Nine months later, his blood tests and CT scans showed no signs of cancer, but the side effects of treatment remain.

Paul lives with ongoing nerve and back pain, fatigue and the risk of PMP returning. Torn cartilage in his knee has also made it difficult for him to walk, while his lack of a spleen means he needs to avoid situations where he could easily pick up infections.

Finding work that accommodates all of this has been difficult. With his superannuation exhausted, donations to his RCA Patient Treatment Fund (PTF) are providing a safety net for everyday expenses if he can’t work.

Any donation you can make to his PTF, large or small, will help give Paul some financial breathing room while he navigates ongoing uncertainty: https://buff.ly/JbcHMtK

With Christmas fast approaching, why not turn something you’re already planning into a fundraiser for people affected by...
09/10/2026

With Christmas fast approaching, why not turn something you’re already planning into a fundraiser for people affected by rare and less common cancers?

You could:

🌭 host a Christmas BBQ or lunch
🧁 organise a Christmas raffle, morning tea or bake sale
🏃‍➡️ create a personal challenge with friends
🫶 ask friends and family to donate instead of giving gifts
💡 or come up with your own fundraising idea!

Our online platform lets you quickly create your own fundraising page, share updates and collect donations, with tax-deductible receipts sent straight to your supporters.

Every fundraiser helps us provide vital support to the rare cancer community. And of course, we’re here to help along the way too!

Learn more or get started: https://www.rarecancers.org.au/fundraise/create-your-own-event/

A cancer diagnosis can have a significant impact on work and career. Continuing to work, taking time away, or returning ...
09/10/2026

A cancer diagnosis can have a significant impact on work and career. Continuing to work, taking time away, or returning to work after treatment can all come with challenges.

Our new Work and Cancer webinar explores practical topics including:

🔷 Workplace rights and common challenges
🔷 Reasonable adjustments
🔷 Setting healthy boundaries
🔷 Navigating work during and after treatment
🔷 What meaningful workplace support can look like
🔷 Featuring expertise from Peter Mac and a lived experience advocate, the session also explores the unique challenges of navigating work with a rare or less common cancer.

Watch the free webinar now: https://www.youtube.com/watch?v=Ls7nADg8znA , and please share this post with anyone who may find it helpful.

The theme of Mental Health Month this year is Together We Thrive.It’s a reminder that while life can sometimes feel over...
04/10/2026

The theme of Mental Health Month this year is Together We Thrive.

It’s a reminder that while life can sometimes feel overwhelming, we don’t have to navigate it alone. Connection, understanding and support can make a meaningful difference to our mental health and wellbeing.

For people affected by rare cancer, life can feel particularly isolating. Please remember our Specialist Cancer Navigators are here to walk with you, side by side, for as long as you need.

You may be rare, but you are not alone. 💙

Contact us at [email protected] to learn more about how we can support you.

Mental Health Australia

Xavier was just 3 years old when he was diagnosed with stage 4 high-risk neuroblastoma. After 18 months of intensive tre...
03/10/2026

Xavier was just 3 years old when he was diagnosed with stage 4 high-risk neuroblastoma.

After 18 months of intensive treatment, he reached NED (no evidence of disease) in 2022. But since then, Xavier has relapsed four times.

His family has travelled to the US to meet leading neuroblastoma specialists and undergo comprehensive molecular testing to better understand what is driving Xavier’s cancer. Following his latest relapse, he will now have targeted radiation, followed by a new treatment approach designed around his tumour’s unique biology.

Accessing this specialised care means ongoing travel between Adelaide, New York and Pennsylvania, and significant costs for treatment, medical expenses, travel and accommodation.

After four years and four relapses, Xavier’s family is determined to keep searching for his cure, but they can’t do it alone.

Please share this story and consider donating to help give Xavier access to the treatment and expertise he needs: https://give.rarecancers.org.au/fundraisers/xavierpudovkinptf

We’re always looking for ways to bring our rare cancer community together!Our informal Coffee & Cake catch-ups are a cha...
03/10/2026

We’re always looking for ways to bring our rare cancer community together!

Our informal Coffee & Cake catch-ups are a chance to meet our Specialist Cancer Navigators and connect with other people who understand, right in your local community.

Hosted at our Bowral and Wollongong offices, these sessions are a chance to ask questions, learn more about how we can support you, or simply enjoy a coffee and a chat.

If you live nearby, or happen to be passing through, we’d love you to join us 💙

Let us know if you’re attending for catering purposes by emailing [email protected]

Our offices will be closed on Monday, 5 October, for the NSW Labour Day public holiday.For urgent support, you can conta...
02/10/2026

Our offices will be closed on Monday, 5 October, for the NSW Labour Day public holiday.

For urgent support, you can contact:
📞 Lifeline: 13 11 14
📞 Beyond Blue: 1300 22 4636

Otherwise, we will respond to messages and emails when we return to the office on Tuesday 6 October.

You can also download a copy of our Rare Cancer Support Guide for practical advice during each stage of your cancer experience at: https://bit.ly/4cZkvs2

Staying well through cancer can involve a lot more than just the clinical side of treatment. Looking after your mental a...
01/10/2026

Staying well through cancer can involve a lot more than just the clinical side of treatment.

Looking after your mental and emotional wellbeing can be equally critical.

That’s why we’ve developed the Jem Program – an evidence-based program full of resources to help people live well with and beyond cancer.

The Jem Program website is packed with information about complementary therapies that can help manage symptoms and side effects, and promote overall wellbeing.

There’s also a suite of articles providing practical advice to help you be kind to yourself during cancer, and a beautiful journal available to purchase – the ideal companion for your own cancer journey, or gift for a loved one.

Learn more at: www.jemma.org.au

Whether you’ve recently been diagnosed with cancer or have been on this path for a while, you’re welcome to join our sup...
29/09/2026

Whether you’ve recently been diagnosed with cancer or have been on this path for a while, you’re welcome to join our support groups.

Bringing together people with lived experience of rare cancer, our groups are a safe, confidential space to connect, share, learn, ask questions and support each other through the rare cancer experience.

Each group is facilitated by a Specialist Cancer Navigator, and meets via phone or videoconference, so you can join from anywhere that suits you.

Ask to join an upcoming group at: https://bit.ly/3HlFUPh

Address

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

Opening Hours

Monday 9am - 5pm
Tuesday 9am - 5pm
Wednesday 9am - 5pm
Thursday 9am - 5pm
Friday 9am - 5pm

Telephone

+61248622768

Website

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