Rare cancers claim the life of one child every four days, making it the number one killer of Australian children.
And it gets worse as the population ages with one person aged from 20-39 and nearly 10 aged from 40-59 dying each day, says a new report titled Just a Little Time 2.0.
Rare and less common (RLC) cancers are also the most common cause of disease-related death across all ages in Australia.
Released on Wednesday by Rare Cancers Australia (RCA), it highlights the lack of research funding and treatments available for the diseases which include brain, kidney, gall bladder, eye, mouth and small intestine cancers.
"It remains extremely disappointing that in the last 20 years when we have seen many advances in common cancers and other diseases, that we have seen very little, if any, progress in the treatment of rare and less common cancers," it says.
The RCA is calling for government funding to specifically target rare cancer research and treatment.
While RLC cancers make up 30 per cent of diagnoses, they result in half of all cancer deaths.
RLC cancer patients have lower chances of survival compared to patients with common cancers due to late diagnoses, fewer treatment options, and reduced access to potentially life-saving medicines.
Only four new medicines have been approved by the Pharmaceutical Benefits Advisory Committee for rare solid tumours, since 2010.
"The tragedy here is cancer specialists believe that many medicines available for common cancers are also beneficial for rare-cancer patients but it is extremely difficult and in some cases all but impossible to get them approved for PBS funding," said RCA chief executive Richard Vines.
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