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15 Aug 2017

Rare Cancers Australia sets new agenda for change

Garvan is proud to support Rare Solutions: A Time to Act, a new report released by Rare Cancers Australia that sets out a roadmap for change in the treatment and care of patients with rare cancer in Australia.

Rare Cancers Australia has released Rare Solutions: A Time To Act, a report that addresses the day-to-day challenges faced by Australians affected by rare cancer and to provide workable solutions to improve their lives. Rare Solutions includes recommendations on innovative clinical trial designs for rare cancer, improving access to treatments, and better collaboration and support for people with rare cancers in Australia.

Rare Solutions was released on August 9 at CanForum 2017, the third annual conference of Rare Cancers Australia, which brought together key leaders in cancer research, treatment and policy in Canberra to discuss key issues surrounding the treatment of rare cancers and actionable outcomes from Rare Solutions.

Professor David Thomas, who heads The Kinghorn Cancer Centre and Garvan’s Cancer Division, worked closely with Rare Cancers Australia in developing Rare Solutions.

Prof Thomas spoke at CanForum about precision oncology and Garvan’s innovative Molecular Screening and Therapeutics clinical trial, which is matching therapies to patients with rare and less common cancers on the basis of their genomic ‘fingerprint’.

Prof Thomas says, “We at Garvan are immensely proud to be working with Rare Cancers Australia in support of their important awareness-raising and advocacy campaigns for those affected by rare cancers.

“Our goals are closely aligned. We both seek to make real change for Australians affected by rare and less common cancers, and to accelerate the implementation of new approaches to treatment and screening that will close the gap in outcomes between rare and common cancers.”

Richard Vines, Co Founder and Chief Executive of Rare Cancers Australia, says, “The recommendations put forward in Rare Solutions: A Time to Act will improve access to clinical trials, data collection and its usage, and networks, and will increase access to affordable treatment options for rare cancer patients if adopted. We simply cannot allow the issues to remain as they are, when real change is possible. We can and must do better.”


Download and read Rare Solutions: A Time to Act.

Watch every session of CanForum 2017, including the launch of Rare Solutions.

Watch the ABC's 7.30 story about Rare Solutions.

Watch the Seven News story.


 What are rare cancers?

Rare and less common cancers are collectively defined as those with an incidence of 12 or less per 100,000 Australians per annum. A total of 186 cancer types are defined as rare or less common.

Although these cancers are individually rare, collectively they account for 30% of cancer diagnoses in Australia, and for half of all cancer-related deaths. Unlike more common cancers (breast, prostate, bowel, lung and melanoma) there is very little patient support offered to patients with rare or less common cancers.


About Rare Cancers Australia

Rare Cancers Australia Ltd (RCA) is a charity whose purpose is to improve awareness, support and treatment of Australians with rare and less common (RLC) cancers. In Australia in 2017, an estimated 52,000 people will be diagnosed with a RLC cancer and 25,000 will die from them, according to Cancer in Australia 2017 estimates.

As distinct from common cancers (breast, prostate, bowel, lung and melanoma) there is very little patient support offered to RLC cancer patients. RCA works tirelessly to ensure that this cancer group will never be forgotten or ignored again.