Opportunities to share your lived experiences
Have your say and share your insights
We’re always finding opportunities for members of our Lived Experience Engagement Program to share their insights to help people living with blood cancer now and into the future. You may be asked to provide feedback about our programs, promote our support services, share your story to build community knowledge about blood cancer, or participate in a research program.
You can learn about the latest opportunities by:
- Regularly visiting this page
- Joining our WhatsApp group
Have you joined the WhatsApp group?
The WhatsApp group is the best way to stay updated about important announcements and the latest opportunities. All group members remain anonymous and your phone number will not be shared.
Current opportunities
To express your interest, please click on the relevant topic and complete the required information.
Level 1:
Quick participation (15-45 minutes)
Level 2:
Moderate commitment (1-4 hours)
Level 3:
Ongoing commitment (months or years)
Give feedback on our services and programs
Check back later for future activities.
Interviews for media or marketing activities
Check back later for future activities.
Spokesperson opportunities
Check back later for future activities.
Participate in a support services program or event
Check back later for future activities.
Join activities in your region
You’re invited to co-design a new survivorship program for young people diagnosed with cancer in adolescence or young adulthood. Led by UNSW Sydney (Dr. Christina Signorelli, Prof. Claire Wakefield, and others), Cancer Council NSW, and more. Funded by MRFF.
Inclusion criteria:
- Diagnosed 15–39 years,
- completed active treatment in last 10 years,
- live in NSW.
Exclusions:
- under 18,
- unable to consent,
- non-English speakers,
- or on active treatment.
Level 2
Become an advocate
We’re recruiting on behalf of a research team at Walter and Eliza Hall Institute of Medical Research (WEHI) who are forming a Non-Hodgkin Lymphoma (NHL) lived experience group to help guide a new 4-year research project.
📅 Recruitment is now underway — they’re looking to finalise the group over the coming months.
What’s involved?
🔹 2–3 online meetings
- Meeting 1 (45 minutes): Research overview + Q&A + short questionnaire exploring perspectives on treatment acceptability, risk tolerance, and barriers to uptake
- Meeting 2 (30 minutes):*Discuss questionnaire themes and clarify feedback
- Meeting 3 (30 minutes, if needed):*Ensure all feedback and direction are captured
⏱ Total time commitment is approximately 1.5–2 hours overall.
📌 As this is a long-term project, there may be occasional future check-ins to ensure the research remains aligned with lived experience perspectives.
Who are they looking for?
Primarily people with lived experience of:
- Non-Hodgkin Lymphoma
- CLL
- B-ALL
- T-ALL
- Multiple Myeloma
🚫 Excluded at this stage:
- Acute Myeloid Leukemia
- Chronic Myeloid Leukemia
- Myelodysplastic Syndromes
- Myeloproliferative Neoplasms
No formal training is required — just standard vetting.
If you’re interested, please email [email protected] me directly.
Level 2
We’re looking for people with CML (Philadelphia chromosome-positive) or myeloma to share their lived experience for important treatment submissions.
Who we’re hoping to hear from:
- Myeloma: received at least three prior treatments
- CML: only if you have Philadelphia chromosome-positive CML
What to share:
- How diagnosis and treatment affect your life, physically and emotionally
- Experiences with treatments and side effects
- Concerns about relapse and whether additional options would help
Your story could support submissions for new medicines:
- Asciminib — for adults with newly diagnosed Philadelphia chromosome-positive CML
- Teclistamab — for adults with relapsed/refractory myeloma
Even if your experience isn’t a perfect match, your story could still help.
Level 1
Our European network partners (via the Acute Leukemia Advocates Network) have asked us to share an international survey exploring sleep quality in people living with blood cancers.
Sleep issues are often raised but under‑recognised, despite their impact on daily functioning, treatment tolerance, and quality of life. The survey aims to gather patient‑reported data to strengthen advocacy and improve care discussions globally.
If relevant to you (as a patient or caregiver):
Level 1
The University of Southern Queensland is running a pilot study to better understand and support unpaid cancer caregivers in regional, rural, and remote areas of Queensland.
If you’re caring for someone with advanced cancer, you’re invited to take part in a short 20-minute online survey. Your feedback will help shape a peer support model that truly reflects caregivers’ needs.
Level 1
The University of Sydney is conducting the Lymphoma Voices PROgram to improve how health surveys capture the impact of treatment on daily life.
If you’ve been treated for any subtype of lymphoma, you’re invited to complete a 20-minute anonymous survey. There’s also an optional follow-up interview if you’d like to share more.
Level 1
Researchers from Deakin University are inviting people with a cancer diagnosis to take part in a short online survey (approx. 25 minutes) exploring the impact of cancer on bone health.
👥 Who Can Participate?
- Aged 18 or over
- Currently receiving or have previously received cancer treatment
💡 Why Get Involved?
- Help improve understanding of bone health challenges in cancer care
- Support future improvements in post-treatment support
- Share your lived experience and insights
📝 What’s Involved?
A one-off online survey about your cancer experience, bone health, lifestyle, and medications.
🔗 How to Participate:
Level 1
Professor Louise Purton and her team at St Vincent’s Institute of Medical Research are inviting people with lived experience to help shape their blood disorder research.
They are looking for at least two consumers per research area – and more are welcome!
🔍 Choose from 3 Research Areas:
- Myelodysplastic Syndromes (MDS)
- Helping improve treatments and understanding of MDS.
(Also relevant for people with MPN.)
- Helping improve treatments and understanding of MDS.
- Supporting Blood Cell Recovery
- Focused on helping patients during and after cancer treatment, including stem cell transplants.
- Bone Marrow Failure Syndromes
- Researching conditions like acquired aplastic anaemia and long-term low blood counts after transplants.
💬 Share Your Story
You can meet the research team (online or in person) to talk about your experience and help them understand the real-life impact of their work.
⏱ Time Commitment
- Story sharing – ~1 hour, whenever suits you.
- Research input – 6–12 hours over 2 months (during grant writing).
- Optional ongoing – Quarterly check-ins (1 hour each).
- Optional public involvement – Help promote the research (e.g. interviews, photos).
🌏 Open to All Australians
You can join from anywhere in Australia – meetings can be virtual or in person.
Interested?
Email Professor Louise Purton at St Vincent’s Institute and mention you heard about this through the Leukaemia Foundation: [email protected]
Level 2
Ethics Approval Number: S252054
The University of the Sunshine Coast is conducting research into the financial strain experienced by AYA survivors of leukaemia. This study explores how financial toxicity impacts education, employment, income, coping strategies, and financial support systems.
You are eligible if you are aged 18 or older and were diagnosed with leukaemia between the ages of 15–24 while living or working in Australia.
Level 2
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Upcoming guests
Thurs Mar 26 – Prof. Eliza Hawkes and Dr. Elizabeth Goodall (Balancing Survival with Living Well)
Thurs Apr 30 – Ms. Eliza Chung (From Consent to Research Outcomes)
Thurs Mar 26 – Prof. Claudia Rutherford (Embedding Patient-Reported Outcomes in Research and Routine Care for Blood Cancer)
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