Rare Cancers Australia (RCA) has launched the country’s first comprehensive support guide dedicated to the unique challenges of a rare cancera disease where abnormal cells split without control and spread to other nearby body tissue and/or organs 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.”
The Guide is broken down into four sections, Diagnosisthe process of identifying a disease based on signs and symptoms, patient history and medical test results, Treatment, Relationships and Support and 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 journeywhat a person experiences/lives from the time they think they have cancer alone. We hope this resource – and the experiences within it – shows patients that although their cancer may be rare, they are not alone.
Order a free hardcopy or digital version of the guide.
Acknowledgements
We would like to acknowledge every individual who contributed their expertise to this guide, and every organisation that provided financial support toward its development. It is a resource that will provide hope and guidance to countless Australians. For help making this a reality, we thank you.
