Community representatives

A group of dedicated community representatives who have a lived experience of a disorder or health condition that our researchers study. Our community representative group provides valuable input and perspectives into the research being performed within the CCS, and members represent a broad range of community views and patient interests.

How to get involved

We are currently taking expressions of interest (EOIs) from people based in Victoria, who have  personal experience (patient family member or carer) with any of the disease groups. People of all ages, diversity and lived consumer experience are encouraged to apply.

Click here for our expression of interest form

What's involved?

Levels of consumer involvement will be tailored to individual preferences and time availability. Different levels of engagement are available including:

  • Academic research engagement: contributing to grant proposals and lay person summaries of research findings
  • Networking: including meet-and-greet sessions with researchers and students, symposiums and seminars
  • Media engagement: contributing to the preparation of articles and advocating research activities at CCS

Please note all consumer training and research team meetings are being held virtually at this time.

Our Partnerships, making a difference

Our relationship extends beyond the research

By Jac Eiffel

As a person living with a high mortality cancer- 12.000 diagnosis and 9000 deaths a year and seeing all my young friends (mainly under 40) die within months of diagnosis, I joined “Cancer Voices” and asked why there was so little funding for research in this type of  cancer.  The answer was simple “everybody dies fast so there are no advocates, no awareness campaigns, no lobbying, therefore no funding”. Read more

Sequencing MPNs could change my life

By Ken Young

On Friday 26 February 2021 I visited the Australian Centre for Blood Diseases (ACBD), part of Monash University’s Central Clinical school situated at the Alfred Hospital precinct in Prahran. This visit coincided with two important anniversaries occurring this month.  Read more

Caring for a loved one, my valued experience

By Ruba Ghabar

My sister in law Christina was diagnosed with AML (FLT3 mutation) in September 2017 at the age of 41. She was eligible for a stem cell/bone marrow transplant and her sister was a perfect match. She received induction chemo in September 2017 which consisted of cytarabine and idarubicin. This treatment ran for 24 hours a day for seven days. A bone marrow biopsy was done after the treatment and confirmed remission. While she was waiting for a bed (for three months), two consolidation treatments of cytarabine was given in November and December to try and keep her into remission until she got a bed. Read more

Going behind the scenes of ACBD's cutting edge translational research programs

On Friday, April 30, researcher members of the Consumer and Researcher Engagement (CARE) committee had the honour to welcome blood cancer advocate and community representative Ms Anna Steiner to the Australian Centre for Blood Diseases (ACBD) for a casual face-to-face meeting and a tour of our state-of-the-art scientific facilities. This private tour represented a delightful opportunity for the CARE committee to introduce Anna to the crucial research being performed by our dynamic team of investigators and take her behind the scenes of the ACBD’s cutting edge translational research programs. Read more

Find out more and get involved