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 (15-30 mins)
Level 2:
Moderate commitment (45 mins-4 hrs)
Level 3:
Ongoing commitment (months or years)
Give feedback on our services and programs
Our Digital Health team is developing a new, accessible digital health and wellbeing platform with evidence-based information and resources to support people living with and beyond blood cancer treatment.
They are looking to understand how people with lived experience prefer to receive information and participate in future engagement opportunities.
Please note: If you have already been involved with the Digital Health team through a recent interview, questionnaire or other feedback activity, you do not need to complete this questionnaire. The team is already connected with you and will contact you directly regarding this opportunity.
For those who haven’t previously connected with the Digital Health team, we’d love to hear from you. Your feedback will help ensure future engagement approaches are accessible, inclusive and responsive to the needs of the blood cancer community.
Level 2
Interviews for media or marketing activities
We’re seeking people with lived experience of leukaemia who have received blood products (blood, platelets, or plasma) as part of their treatment. Parents or carers may also nominate if speaking on behalf of a child who received blood products during leukaemia treatment.
We’re particularly interested in stories where blood products played a significant role in treatment, recovery, or survival.
What’s involved?
- Potential media opportunities (radio, print, or TV) as part of a national World Leukaemia Day campaign with Leukaemia Foundation and Lifeblood
- Media interviews are not guaranteed
- Time commitment approximately 30 minutes to 2 hours, including a briefing call
Availability required: Week of 31 August to 4 September 2026, especially Friday 4 September
If interested, please send a brief summary of:
- Your diagnosis (or your child’s diagnosis)
- Blood products received during treatment
- How donated blood products impacted treatment, quality of life, or survival
Level 2
We’re looking for people affected by blood cancer, including patients, caregivers, and family members, who are willing to share how blood cancer has impacted sex, intimacy, or romantic relationships.
What’s involved?
- Sharing photos and/or short videos
- Talking about changes, challenges, or experiences relating to intimacy, relationships, or dating after a blood cancer diagnosis
- No specific age, location, diagnosis, treatment, or demographic requirements
Time commitment: 30 minutes or less
Level 2
Our Social Media Team is looking for several LEEP members to share their lived experience as part of Blood Cancer Month (September) content.
We’re seeking people with experience of:
- Myeloma, lymphoma, acute leukaemia, CML, CLL or rare/other blood cancers.
- A child or teenager with blood cancer (via parent/carer).
- A father living with blood cancer.
- A grandparent.
- First Nations and culturally and linguistically diverse (CALD) communities.
Participants will be asked to provide 6–10 photos from their blood cancer journey and answer a series of short questions about their diagnosis, treatment, costs, challenges, support received and what blood cancer means to them.
Level 2
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
Learn about clinical trials, accessing novel treatments, and how trial participation influences drug access in Australia.
Level 2
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
Advertised on behalf of the Walter and Eliza Hall Institute of Medical Research (WEHI), this opportunity is seeking people affected by blood cancer, as well as carers and family members, to partner with researchers and help shape future blood cancer research.
WEHI is particularly interested in hearing from people with lived experience of:
- Leukaemia, lymphoma, CLL, AML, paediatric blood cancers, and other B-cell malignancies
- Clinical trials, experimental therapies, or immunotherapies
- Quality-of-life impacts associated with blood cancer and its treatment
Consumer Partners help researchers improve study design, strengthen grant applications, and ensure research remains focused on what matters most to patients and families.
⏱️ Commitment: Introductory training plus approximately four 1-hour meetings per year with a researcher, along with occasional opportunities to review materials and provide feedback.
No scientific or research background is required, and training and support are provided.
Level 2
Researchers are seeking participants aged 60+ with a cancer diagnosis, as well as caregivers/family members of older adults with cancer, to complete a survey about how cancer may affect thinking and memory.
What’s involved?
- Online survey (approx. 20 minutes)
- Completed on computer or tablet
- $20 grocery voucher provided
- Optional follow-up interview opportunity
Level 1
Murdoch Children’s Research Institute (MCRI) is seeking consumers to help shape research focused on improving outcomes after stem cell transplantation for blood cancer.
The project aims to improve transplant outcomes and reduce complications such as graft-versus-host disease (GvHD), while preserving the transplant’s cancer-fighting benefits.
Researchers are looking for people with lived experience to provide input on:
- research priorities and study design
- plain-language materials and summaries
- communication of research findings
Participation would include:
- 1 in-person meeting per year (30–60 mins)
- 3–4 virtual meetings annually
- occasional surveys or feedback activities
💲Participants will be reimbursed for their time.
Level 2
On behalf of the research team at Deakin University, I’m sharing an opportunity for those with lived experience of blood cancer (18+) to participate in an important study.
🩺 What’s it about?
Exploring people’s experiences with needles in medical procedures to help develop painless alternatives.
⏱️ What’s involved?
* 10–15 minute online questionnaire
* Completely anonymous (no names required)
👉 Take part here:
https://redcap.link/needleexperience
If this resonates with you—or someone in your network—please consider participating or sharing. Your voice can help shape better patient experiences 🙏
📧 If you have further questions, please contact: [email protected]
Level 1
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
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