Rare Cancers Australia- established and head-quartered in Bowral, has been providing financial and compassionate support to rare and less common cancer (RLC) patients since June 2012. The organisation’s mission is to improves the lives and outcomes for Australians living with rare and less common cancers.
At the forefront of accessible information and emotional support the Rare Cancers Australia team has been working towards not only raising awareness about the lesser-known cancers and boosting funding from the government, but also supporting some of the 42,000 patients diagnosed with an RLC each year through their one-on-one counselling programs, creating an online community and by designing smartphone apps.
Richard Vines, CEO, Rare Cancers Australia founded the charity together with wife Kate to improve the lives and outcomes for Australians battling a rare or less common cancer.
Richard Vines and his wife Kate founded the RCA organisation as a means of making sure Australian RLC patients receive fairer access to treatment and resources. Advocating to the Australian Government in Canberra, RCA has been advocating for policy reform around research and treatment for rare cancer patients.
Richard also speaks about the use of their website as a tool for people looking for guidance and a support community.
“We are using technology to ‘disrupt’ cancer. We are building a database on the website where people can look for centers of excellence and expertise for particular rare cancers.
There is always someone in Australia with knowledge and expertise and sometimes all that means is their treating clinician can consult a colleague who has done research in the area and get a better understanding.”
“We also developed a mobile phone app, CAN.recall that records patient consultations and provides a checklist of questions,” Richard explained.
The first consultation can be daunting and a lot of questions are left unanswered. With the app it removes some of the pressure on the often shell-shocked patient to remember information with the ability to audio record the clinicians answers that can be replayed at a later time.
Richard and Kate continue to work with government, clinicians and industry and are making certain that these cancers, of which there are over 200, will never be forgotten or ignored again.
“RCA has done a lot of fundraising through our website directly for patients to pay for pharmaceutical treatment costs,” Vines said. A unique scheme on the RCA website allows patients to put their story online and raise funds to help with their treatment. Of the donations any surplus funds are then reinvested to help other patients in similar circumstances.
A record 240 people climbed to the top of Mount Kosciuszko to raise money for Rare Cancers Australia earlier this year as part of the charity’s Mount Kosi Challenge event held annually in March.
RCA supports patients from every state in Australia but Richard said it can be a very lonely time for some. “Not only does being diagnosed with a rare cancer come with health issues but it also causes massive financial disruption.”
“Sometimes you just need a break.” That is what RCA is advocating for in conjunction with the Australian Government.
Right now RCA is supporting a year-long clinical trial of 100 RLC patients to find the molecular commonalities between the more common cancers and those that are rarer to identify whether there are current treatment methods that will work for rare and less common cancer patients.
RCA recognises the generosity of the cycling community and thanks everyone for their support.
Bowral is where Richard and Kate Vines reside and they have received tremendous support from the local community for Rare Cancers Australia.
Clients of Studio2576 in Bowral have also banded together to support the organisation in time for the Bowral Classic event in October. Read about the boutique spin studio on our website here.
If you would like to ride to raise funds for Rare Cancers Australia, register your fundraising goals at bowralclassic.com.au/charity.
For more information on Rare Cancers Australia, visit their website at rarecancers.org.au.
