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Inform

Information to empower

You should have equitable access to trusted information and education to empower informed choices.

People with blood cancer and their families often don’t know how to find relevant and trusted information to inform conversations with treating doctors, understand their diagnosis and treatment options, and access a range of supportive care options available for themselves and their families.  

People living with blood cancer know their history and treatment goals better than anyone else. By supporting patients with access to relevant and trusted information, people living with blood cancer will know the right questions to ask and make informed decisions that are best for them and their circumstances. 

We know that access to this type of information not only impacts on a person’s ability to survive but to live well.  

Our focus

As the leading source of free blood cancer information, education and support for people living with blood cancer in Australia, we are here every step of the way to help navigate the road ahead and assist people in making informed decisions about treatment and care. These choices will potentially have significant long-term health and financial implications for themselves and their families. 

  • We will provide access to credible information about disease-specific blood cancers, treatment options, including clinical trials, and resources to live well after treatment, including managing symptoms and side effects. 
  • We will empower patients with the tools to engage with their haematologist and the broader healthcare system to achieve their goals for living well with blood cancer.  
  • We will provide information on financial, practical and other government support available to manage the everyday impacts of living with blood cancer. 
  • We will use real-time data to inform and deliver a service that is credible, relevant and timely for people living with blood cancer. 
  • We will provide digital access to information people living with blood cancer need when they need it to access the right care. 

Why inform?

More than one in five people with blood cancer

feel ‘completely uncertain’ or have ‘lots of questions’ about their diagnosis, and one in ten feel the same about their treatment plan

Graham builds confidence through knowledge

Graham Fell (pictured) has armed himself with trusted information and support to give him the confidence to live well.

Graham said he had “no symptoms” before his diagnosis with a type of blood cancer called chronic lymphocytic leukaemia (CLL). The 75-year-old had visited his doctor in 2018 seeking relief for back pain but was instead told to have a blood test, which revealed his cancer.

CLL is a type of slow-growing leukaemia with only 1,000 Australians diagnosed every year. Living in country Victoria, the Wangarrata local was given referrals to five different haematologists.

“I eventually got into Peter MacCallum Cancer Centre in Melbourne under a brilliant haematologist, Dr Mary Anne Anderson,” Graham explained.

“I’m not in active treatment and I may not ever need it, but Dr Anderson is monitoring my condition. My results will sit in a data bank and contribute to a better of understanding of CLL.”

Graham was then put in contact with the Leukaemia Foundation by his cancer centre.

“While Peter Mac are experts in treatment, I really needed the human element and more personalised support that considered the wider ramifications of diagnosis,” Graham said.

“You have a real confidence and trust in the Leukaemia Foundation staff. The information they’ve developed is incredibly comprehensive and you can see how a caring approach has been applied.

“It really examines the disease at every level: diagnosis, treatment, survivorship, research, advocacy and support.

“Katherine from the Leukaemia Foundation even came up to Wangaratta to run a CLL symposium in the local library.

“The connection you make at these groups is incredibly important. To hear so many different stories reassures you and provides further information about your own journey.”

Learn about our Cancer Concierge pilot program, which has been presented at several conferences, including CLL Horizons (pictured).