"We are strong and we are survivors".
That was the message from 15-year-old Darcy Gilmour who has missed months of school because of rare blood disorders and a bone marrow transplant.
Speaking on behalf of students just like him, Darcy told the launch of a 'Missing School' report at Parliament House in Canberra on Monday, their journeys had made them resilient.
"School, for all our complaints about it, when we're well is definitely important," he said.
The group 'Missing School' was started by three Canberra mothers whose children all had life-threatening illnesses and were being treated at the Turnbull ward of the Sydney Children's Hospital.
It's estimated Australia has 60,000 seriously-ill students.
Darcy's mother Megan said the journey to release the report by the Australian Research Alliance for Children and Youth has been a difficult one.
"Difficult because we came to it through our painful personal experience," she said.
The report recommends a more integrated learning program, which would include using technology to connect kids to the classroom.
There is also a push for greater awareness about the issue and for promoting more inclusion in schools, so students do not feel left out when they return after periods of absence.
The alliance also wants more research, noting their 60,000 student estimate - based on Australian Bureau of Statistics data - is only rough.
Prime Minister Malcolm Turnbull lent his weight to their cause, providing a written statement to the event.
Patrick Vann, who suffers severe eczema, read it out to those gathered.
"I commend everyone here today for your dedication to improving outcomes for children who miss school due to significant illness," Mr Turnbull said.
You are doing a wonderful job raising awareness of this issue as well as bringing hope and encouragement to many young Australians, their families and carers, he said.
"For that you have my admiration and thanks."
Federal Education Minister Simon Birmingham is open to sitting down with the group to talk through what can be done to help.
But he earlier told Sky News the delivery of on-the-ground support has to be done by the states.
