Kate and Richard Vines are declaring Saturday 26 June Australia’s first Rare Cancers Awareness Day, in line with the ninth anniversary of Rare Cancers Australia (RCA), the leading charity the husband- and-wife-team founded.

From the humble beginnings of working from their family home in Bowral, Kate and Richard have grown RCA into a powerhouse for change, support and innovation for the rare cancer patients of today and tomorrow. They now lead a team of 17 passionate professionals who support more than 500 patients a year from across the country and influence major government policy – in fact, the Vision 20-30 report released by RCA last year became the catalyst for the Federal Minister for Health, the Hon. Greg Hunt announcing the development of Australia’s first National Cancer Plan.

“That is what we are recognising this Saturday on the first Rare Cancers Awareness Day – the progress made, the work that still needs to be done to improve the lives and health outcomes of patients living with a rare cancer diagnosis, and the strength of our community as a whole,” Richard said.

“We started RCA nine years ago after Kate was diagnosed with Medullary Thyroid Cancer in 1991. Like many rare cancer patients, Kate was told by her doctor that he knew nothing about her condition. The journey that followed was one of uncertainty, confusion, isolation and frustration. That is why we started RCA, because we believe that no Australian should have to go through their cancer journey alone.”

RCA works alongside patients and families and tries to ease their burden by helping them to navigate their options and connect with specialists and clinical trials for their rare conditions. The charity also provides practical and emotional assistance, financial and fundraising help, and works with industry and government to drive meaningful change at the individual patient and wider systemic levels.

“A cancer diagnosis is devastating enough but being diagnosed with a type of cancer that is not well known means these patients are often penalised. Because they are “rare” this means limited and in some cases no treatment options, research opportunities, education or support,” Kate explained.

“For me, this meant exploring costly and high-risk non-traditional treatment options. Many of the patients we support are in the same boat. They are often considered as ‘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.

“That is where RCA comes in. Rare cancer patients are living with a complex diagnosis, and this requires complex support. RCA understands that each person is different, and every cancer is unique, and we personalise our support to meet the needs of each individual.”

This Saturday 26 June, RCA is working to raise awareness about the support available and the strength of the rare cancer community by uniting their voices on social media using the #WeAreRare hashtag for Australia’s first Rare Cancers Awareness Day. 

“The feedback we have received from rare cancer patients is that there seems to be an awareness day for everything, except rare cancers. Rare Cancers Awareness Day is a day for them. It is a day to reflect, celebrate and raise awareness about rare cancers, and to ensure those impacted know that they are not alone, and help is available,” Richard said.