Where it all began

Kate was diagnosed with medullary thyroid cancer in 1991. Her GP had never heard of the condition, didn’t believe she could be cured and told her she had three months to live. She was thrust unexpectedly into the world of rare cancer – like some 52,000 Australians each year. A world of helplessness, loneliness, and questions that nobody seemed to have the answers to.

That is exactly why she and her husband Richard Vines founded Rare Cancers Australia in 2012, a charity dedicated to rare cancers awareness and support. They had a vision that one day they might be able to provide support to patients across Australia so that they too didn’t have to go through their cancer journey alone.

Our Story

There is a simple story that describes the essence of Rare Cancers Australia. 

A boy and his father are walking along the beach. They are met with starfish strewn as far as the eye can see. The little boy picks one up and throws it back into the sea. 

“Don’t bother, son, there are too many, you can’t make a difference to them all,” says the father. 

The boy picks up another starfish, throws it into the sea and says, “I made a difference to that one.” 

This story perfectly illustrates RCA’s approach to patient support; an approach that originates from co-founder Kate Vines.

What are we doing for Australians impacted by rare cancer

We support patients with rare, less common and complex cancers by:

Providing 360-degree personalised support

We provide each patient with access to their own Specialist Cancer Navigator for personalised clinical, emotional, financial and practical support throughout their diagnosis, treatment and beyond.

With specific expertise in the challenges a rare cancer journey can bring, our Specialist Cancer Navigators tailor their support to exactly what matters to the patient, no matter how complex.

Examples include helping patients to navigate the health system, access specialists and treatment, connect with services, and fundraising. Often, it includes just being there to listen and understand.

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Driving change in access, affordability, and quality of care

We bring people together to influence meaningful policy change with immediate impacts, improving access to the best care, treatment, and technologies for the patients of today and tomorrow.

Examples include advocating for research, better access to clinical trials, faster access to funded therapies, and patient participation in decision making. It also includes putting forward recommendations, such as in the Rights and Roles of Australian Cancer Patients Report, the Vision 20-30 Report and the Rural Care Travel Plan and creating solutions like the RCA Patient Handbook and the MAP (Medicines Access Portal).

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