0
Donate now
A childhood cancer diagnosis is devastating for any family. Yet because childhood cancer is considered a rare disease, children can face additional challenges beyond their diagnosis, including limited treatment options, fewer clinical trials and reduced investment in drug development.
On Rare Cancer Awareness Day, we explore why rarity creates inequity for children with cancer and how collaboration is helping drive research, access and hope for families across Australia.
The term ‘rare cancer’ encompasses hundreds of different types of cancers, and although each type affects a small number of people, collectively, they add up. The Kids’ Cancer Project’s Head of Research, Justine Stehn, explains that rare cancers are defined by the number of people in a population who develop a type of cancer. "Because childhood cancer affects relatively few children, it's considered a rare disease," says Justine.
"Just because it's rare doesn't mean the impact that it has is not profound."
Although the number of children diagnosed with cancer in Australia is relatively low, it remains the leading cause of disease-related death in Australian children. The Kids’ Cancer Project is committed to changing that.
Because rare cancers affect fewer people, investment in developing new treatments is often focused on larger patient populations. This creates significant inequities for children with cancer, who may have fewer treatment options and less access to therapies designed specifically for them.
"We need to make sure that we are looking at novel treatments for children, not just retrofitting treatments that were designed for adult cancer," Justine says.
"To know whether a treatment works, you need large clinical trials involving enough people to build strong evidence. When a cancer is rare, that's much harder to achieve."
The Kids' Cancer Project is committed to addressing the unmet needs created by childhood cancer's rarity. By funding innovative research, supporting clinical trials and fostering collaboration, we help accelerate progress in areas that might otherwise be overlooked.
The Kids' Cancer Project collaborates with organisations such as ANZCHOG (the Australian and New Zealand Children's Haematology/Oncology Group) to co-fund clinical trials, invest in the infrastructure needed to deliver them, and help more children access innovative treatments.
To read more about how we work with ANZCHOG, click here.
“That's where we come in. We make a real difference by investing in research that others often can't. It's research that has the potential to improve outcomes for children on multiple levels," Justine says.
“We're investing in innovative research to discover new treatments, while also supporting the translation of those discoveries from the bench to the bedside so children can access them.
"This is a journey that the whole family goes on. It doesn't matter if it's a common or rare cancer – the impact is profound on families.
"We need better results to move the dial."
Childhood cancer may be rare, but access to better treatments shouldn't be.
Through research, collaboration and advocacy, we're working to ensure that rarity never determines a child's future.
Our vision is to see a one hundred per cent survival rate for children with cancer while eradicating the harmful impacts treatment can bring.
