Lived Experience Engagement Program

The Lived Experience Engagement Program (LEEP) empowers people with blood cancer and their loved ones to share their personal experiences to help shape and improve our services, programs and advocacy.

We believe insights can be gained and problems can be solved when lived experiences are shared by people of all ages, backgrounds and stages of their blood cancer journey. Our program includes members from metropolitan, regional and remote areas, and is designed to be accessible for everyone.

If you’d like to give back, find meaning from you or your loved one’s health journey or improve experiences for people with blood cancer in the future, LEEP may provide the opportunities you’ve been searching for. 

Get involved in a webinar

Alana Hodgson

“It was so nice to be able to speak at the webinar program. As parents, we remember vividly how alone we felt during our daughter’s cancer journey – especially right before her transplant. So, to be able to share our story and a few tips and tricks means the world to us!”

How does it work?

LEEP is open to people living with blood cancer, their caregivers and bereaved loved ones (subject to eligibility criteria). Our members can be involved at a level that matches their interests, availability and skills.

You may be invited to contribute to:

• Fundraising proposals and other activities to help promote campaigns and events such as the World’s Greatest Shave
• Media publicity, website stories and podcasts to share the real-life stories of people with blood cancer
• Submissions to help us advocate for better policies and diagnostics, and easier access to new and innovative therapies
• Clinical trials and other research programs to help scientists and clinicians discover better treatments and therapies
• Design, delivery and evaluation of our blood cancer services and programs

What are the benefits?

As a LEEP member, you can make a real difference and strengthen support for people with blood cancer. Your valuable, first-hand insights can help raise awareness and improve services for the blood cancer community. Many members experience a deep sense of fulfilment and purpose as they connect with like-minded people and build meaningful networks through the program. You may also have opportunities to advocate for others, expand your professional skills and access future roles with the Leukaemia Foundation.

Join a committee

Yan-Fei Zhao

“Over the past few months, I’ve had the privilege of working with the Leukaemia  Foundation’s Product Development Committee on exciting new projects that support the blood cancer community. As the Founder and Head Coach of Coaching Simplified, an online fitness coaching company, I was proud to contribute to their Online Blood Cancer Support Service by creating videos and media that aim to help users feel more connected and inspired through the lens of a real-life survivor.”

Step 1 Eligibility criteria

You will need to meet one of the following criteria to become a LEEP member. These have been developed to help ensure people with blood cancer and their loved ones prioritise their health and wellbeing while going through treatment or the grieving process.

You’re eligible if you meet one of the following criteria:

• You or your loved one were diagnosed more than 12 months ago and have completed initial treatment
• You are receiving ongoing treatment and were diagnosed more than 12 months ago
• You or your loved one have been re-treated and this commenced more than six months ago
• You or your loved one haven’t needed treatment and were diagnosed more than 12 months ago
• You are joining as a bereaved loved one and it has been more than 12 months since you lost your loved one

This program isn’t suitable if:

• You or your loved one are receiving palliative care
• You or your loved one have recently relapsed
• You or your loved one have treatment planned but haven’t commenced it yet

If you’re not currently eligible, please check back when you or your loved one reaches 12 months post-diagnosis, or 12 months after the loss of your loved one.

Step 2 Registration

Did you meet one of the eligibility criteria (above)? If so, you’re ready to take the next step and register.

Please complete the following registration form so we can learn more about you and determine if it’s the right time for you to join the program. These details will also help us understand the opportunities you are most interested in.

Please note, you can revise your choices at any time by notifying us.

Get involved in a podcast

Harriet Green

“Back in May, I had the privilege of being a panelist on the Leukaemia Foundation’s online webinar, Understanding the role of GPs in blood cancer care. It was a very positive and meaningful experience, and I am grateful for the opportunity to share my story and insights with a wide audience.”

What happens next?

Once you successfully register for LEEP, we’ll add you to our database. You’ll also receive a welcome email within 24 hours full of useful information to help you get started in the program.

If you have any questions about applying for LEEP membership, please contact our Lived Experience Engagement Coordinator via [email protected] and they will get back to you within three working days.

Don’t forget!

We also have support available for you:

• Connect with our Supportive Care Services team on 1800 620 420
• Join our online support groups and webinars
• Access our Online Blood Cancer Support Service

Our team is here for you, every step of the way.