Rare Cancers Australia

When a person is diagnosed with a rare cancer, it can be an isolating and overwhelming experience.

Often, they have never heard of their cancer type before being diagnosed, let alone met anyone else with a similar diagnosis. When you are one of just a handful of people in the country – or even the world – diagnosed with the same cancer, it can be hard to find anyone who really understands.

That’s why Rare Cancers Australia (RCA) support groups are so vital. They bring together people who have been on a similar path, providing safe, confidential spaces to share, learn, ask questions and connect.

Groups run by phone and videoconference, alongside private Facebook Groups and monthly coffee and cake sessions at RCA offices in Bowral and Wollongong, NSW. Each group is facilitated by a RCA Specialist Cancer Navigator.

Here’s what some members have to say about our support groups:

- “RCA support groups became my lifeline. We’re scattered all over. Without these groups, how would we ever find each other? We share treatment options, clinical trials, and things to ask our doctors. It wasn’t just support. It was survival.”

- “Their monthly support groups provide a space to talk to others who understand what it’s like having a rare diagnosis. There is genuine kindness and care that comes from each group. It’s a safe place to share thoughts that those unaffected by cancer wouldn’t understand.”

- “They introduced me to a network of peers that I could chat to, share experiences with, ask questions of and that genuinely understood where I was coming from, because they’d been there too.”

Your fundraising in Dry July 2026 will help keep our support groups running and growing, ensuring more people can connect with each other and nobody has to feel they are facing a rare cancer alone. "

Funds raised from Dry July in 2025 helped Rare Cancers Australia continue to provide truly personalised, unique support for people diagnosed with rare and less common cancers.

Our team of dedicated Specialist Cancer Navigators do whatever it takes to ease the burden of a rare cancer diagnosis. They connect people with information, treatment options, peer support and other services, as well as providing a steady presence and listening ear through every stage of a cancer diagnosis, treatment and beyond.

Demand for our support continues to grow. In our Cancer Lived Experience Survey conducted last year, 60% of respondents with a rare or less common cancer said they would have liked access to a supportive care navigator. However, just 24% accessed this type of support.

The generosity of people who participated in Dry July, and their donors, has helped us continue to grow our patient support programs and reach more people when they need someone in their corner.

Throughout 2025, we:

• provided personalised support to 1,920 people with rare and less common cancers, and their families

• linked 460 patients and families with relevant support and services across the country

• connected more than 3,000 people through our range of peer support groups.

You can learn more about our tailored support for people with rare and less common cancers at: https://www.rarecancers.org.au/how-we-help-you/

At Rare Cancers Australia (RCA), we provide patients with unique support no one else does, in a way no one else does.

When a patient registers for our support, they receive a dedicated Specialist Cancer Navigator - someone to walk side by side with them and do whatever it takes to change the story of their rare cancer diagnosis.

RCA’s navigators are there to listen and to understand. As soon as they pick up each call, the wheels start turning in their minds, thinking about what could be most helpful to that person in that moment.

A diagnosis of a rare, less common or complex cancer can be confusing, scary and isolating.

Often it comes with enormous expenses too – such as accessing treatments that aren’t subsidised for small-population rare cancers, or people from rural and regional areas who are forced to travel to access specialist treatment.

In fact, about a third of people who contact us mention financial stress related to their cancer diagnosis in their first call.

“The financial toxicity of a cancer diagnosis is real, and on top of the cost of living, the pressure is immense,” said Cancer Navigation Program Lead, Jaime Macedo.

Along with financial support, our navigators provide emotional support, help people understand treatment options and navigate genomic testing, connect people with others facing similar experiences, and provide reliable information.

Our Rare Cancer Support Guide offers practical tips and advice at each stage of a cancer experience, including what to expect and questions to ask.

For Jaime, being able to provide personalised support at every stage of someone’s cancer experience is incredibly rewarding.

“Personally, I take great pride in reassuring the patient that ‘I will be here in your corner, moving forward, whenever you need me’,” he said.

Thanks to the generous support of our Dry July participants and their networks, Rare Cancers Australia’s Specialist Cancer Navigators continue to provide the unique support no one else does, in a way no one else does.

Our navigators provide Australia’s only program dedicated to supporting patients with rare, less common or complex cancers.

With Dry July funding, we’ve been able to help hundreds of patients navigate their cancer journeys. Our Specialist Cancer Navigators connect people with:

- Clinical support, like navigating the healthcare system, exploring clinical trials and finding treatment options

- Emotional support, walking side by side with people for as long as they need

- Financial support, connecting people with services and resources to ease cancer-related expenses

- Peer support, to help connect people who have similar experiences to learn, share and feel less alone.

We also provide support for carers, and run online and virtual support groups so people can have real conversations with others who truly understand.

Your support during Dry July means we can change the story of a rare cancer diagnosis, and ensure nobody has to face cancer alone.

Thank you for supporting Rare Cancers Australia this Dry July!

We are incredibly grateful for your efforts giving up alcohol, asking your networks for donations, and spreading the word about our organisation during July. Together, we raised more than $87,500 to support people affected by cancer.

We wanted to share a little more about the impact of your fundraising. The diagnosis of a rare, less common or complex cancer brings a range of challenges, including fewer treatment options and specialists, less information and research, and limited support.

At Rare Cancers Australia, we know a person’s cancer is as unique as their fingerprint, and the support each individual or family needs is different too. Our Specialist Cancer Navigators take the time to listen and understand what support could be most useful to each person, in each moment.

This could include:

• distributing our Rare Cancer Support Guide

• delivering care packs

• crisis funding to help people manage the rising cost of living alongside treatment costs

• peer connection through facilitated online support groups

• connecting individuals and families to specialised services to meet their needs.

We stay connected with each person throughout their cancer experience, and beyond.

Every year, demand for our services is growing, compounded by cost-of-living pressures. More than a third of people who contact our Patient Support team mention financial stress in their first call, so your support through events like Dry July is more important than ever.

Thank you again for being part of Dry July in 2024. If you’d like to stay up-to-date with our work throughout the year, you can sign up for our newsletter.

We look forward to you joining us again for Dry July in 2025!