Rare Cancers Australia

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!

Every phone call is different for the Specialist Cancer Navigators at Rare Cancers Australia (RCA).

It could be someone whose world has just been shattered with a life-changing diagnosis.

It could be someone who is excited to share positive test results, or a life milestone they had doubted they would reach.

It could be someone whose treatment is no longer working, or who is facing an impossible choice between paying for potentially life-saving treatment or putting food on the table for their family.

For that reason, Cancer Navigation Program Lead, Jaime Macedo, says there’s no typical day in the Patient Support Team.

But no matter the scenario, there’s one thing in common for every single call.

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

“A mother diagnosed with cancer was going in for surgery and was going to be out of action looking after her two young children for six weeks,” Jaime said.

“She was concerned how to get through this period.

“We worked alongside her, one of her friends and Carer Gateway to coordinate a roster system to look after the children, and covered the cost of any babysitting fees.”

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.

“People often reach out for financial support, mainly for travel costs and medical bills,” Jaime explained.

“The financial toxicity of a cancer diagnosis is real, and on top of the cost of living, the pressure is immense.”

Along with financial support, Jaime and the team provide emotional support and help them understand their treatment options.

For some people, reaching out to RCA helps them meet other people who truly understand their experience.

“A support group is very patient-led and brings together people living with a similar diagnosis to share experiences, voice frustrations, ask questions, guide others and provide reassurance and encouragement,” Jaime said.

There’s also the Rare Cancer Support Guide, which gives people practical tips and advice at each stage of their cancer. It answers the questions people may be too afraid to ask, and provides ideas about things to ask their healthcare team to better understand what to expect.

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.