Connect with the Lived Experience Network

We invite professionals working within Australia to connect with members of the National MND Lived Experience Network (LEN) for a specific engagement activity, relating to:

• research
• care and support
• raising awareness of MND
• developing or reviewing information material about MND
• advocacy/ policy

Submitting a request

Before submitting your request:

• Please consider your engagement plan and how you will support meaningful inclusion of people with lived experience of MND in your activity. For practical tips, please refer to our Engagement Checklist.
• To support consistent, equitable, and respectful practices on recognising, reimbursing, and paying people with lived experience of MND who participate in engagement activities, please refer to our Guide to Paid Participation.

Useful Resources

• Statement on Consumer and Community involvement in Health and Medical Research (2026), NHMRC and Consumers Health Forum of Australia.
• National Consumer Engagement Strategy for Health and Wellbeing (2025), Australian Government – Department of Health and Aged Care.
• Health Research Hub - Australian Health Research Alliance (AHRA). Provides practical, high-quality tools and real-world examples that support meaningful consumer and community involvement in health and medical research, as well as healthcare improvement.
• Involving consumers in laboratory-based research, AHRA.

To submit your request complete the online Request Form below.

All requests will be directed to the LEN Program Manager and reviewed by the LEN Approval Panel, on the third Wednesday of each month. Please allow a 2-4week lead time, allowing for Approval Panel decision, promotion of your activity, and managing expressions of interest.

Please note: we cannot guarantee that LEN members will express interest in your activity.

For assistance or enquiries, please email the Julie Labra, LEN Program Manager via: [email protected]