Kate and Richard Vines saw a need for more awareness around rare cancers, after Kate's diagnosis thirty years ago.
Subscribe now for unlimited access.
$0/
(min cost $0)
or signup to continue reading
Mrs Vines was diagnosed with medullary thyroid cancer, and was told by her doctor that he was not informed about her condition.
The spouses from Bowral then founded the charity Rare Cancers Australia (RCA) in 2012 to change this for other rare cancer patients.
Mr and Mrs Vines are declaring this Saturday as Australia's first Rare Cancers Awareness Day.
"That was why we started RCA, because we believed that no Australian should have to go through their cancer journey alone," Mr Vines said.
RCA grew from the Vines household, to providing practical and emotional assistance to over 500 patients a year across Australia.
The charity has raised funds for patients and their families through getting the community together for golf and cycling days, and treks to Mt Kosciuszko.
Read more:
Mrs Vines said she saw her personal struggles when it came to seeking treatment reflected in many patients.
"They are often considered "lost causes" or put in the "too hard basket" because of their complicated diagnosis, which leaves them needing to fight harder for answers and hope," she said.
"RCA understands that each person is different, and that every cancer is unique."
The charity has been a key player in putting the spotlight onto rare cancers with government policy after their Vision 20-30 report swayed Minister for Health and Aged Care Greg Hunt's announcement of developing the first national cancer plan.
Mr Vines said Rare Cancers Day is an opportunity to assure rare cancer patients that they can seek support from them, and the community.
"The feedback we have received from rare cancer patients is that there seemed to be an awareness day for everything, except rare cancers," he said.
"It would be a day to reflect, celebrate and raise awareness about them, and to ensure those impacted know that they are not alone."
People can learn more about the national day and the charity online or follow #WeAreRare on social media.
We depend on subscription revenue to support our journalism. If you are able, please subscribe here. If you are already a subscriber, thank you for your support.