New support guide for Australians living with rare cancer

Published: 23 February 2023

Rare Cancers Australia support guide

Rare Cancers Australia (Opens in new tab) (RCA) has launched the country’s first comprehensive support guide dedicated to the unique challenges of a rare cancer experience.

Developed in close partnership with patients, carers and health professionals from across the cancer care sector, the new Rare Cancer Support Guide contains everything the RCA team has learned from 10 years of supporting Australians with rare, less common and complex cancer — all in one place.

Christine Cockburn, General Manager of RCA, said the guide provides patients and their family and friends with information, tools and advice they can trust.

“In Australia, one person is diagnosed with a rare or less common cancer every 10 minutes. Typically, these people have gone without support resources tailored explicitly to their needs. Instead, they have had to rely on information designed for common cancers, or sometimes nothing at all. They often need to undertake extensive personal research to find the answers they need during an extremely distressing time in their lives."

“We believe people shouldn’t have to work so hard to find what they need. We created the Rare Cancer Support Guide to help patients and their family and friends manage this stressful time. For the first time, it brings together trusted information and guidance to help them navigate every stage of their experience, all in one place,” explained Ms Cockburn.

About the Rare Cancer Support Guide

The guide is broken down into four sections:

Diagnosis
Treatment
Relationships and Support
Looking Ahead

Each section can be read as a stand-alone booklet, or as part of the complete set, and contains patient tips and stories, questions to ask, and additional resources for people looking for further information.

Ms Cockburn says the guide is one way RCA can ensure that every cancer patient, regardless of rarity, has immediate access to the support and navigation expertise they deserve.

No Australian should have to go through their cancer journey alone. We hope this resource — and the experiences within it — shows patients that although their cancer may be rare, they are not alone.

To order a free hardcopy or digital version of the guide, visit www.rarecancers.org.au/supportguide (Opens in new tab)

Last reviewed: March 2023