The Lived Experience Network connects people with lived experience of motor neurone disease (MND) with organisations and other groups seeking their input.
Understanding the lived experience of MND begins with listening to the voices of those most affected. In June 2024, the National MND Lived Experience Network (LEN) was established. Supported by MND Australia and FightMND, the LEN aims to increase engagement between people with lived experience and professionals working in the field.
Why is lived experience important?
Lived experience refers to the first hand knowledge gained by people living with MND and by those who care for them. It reflects their personal journeys, everyday challenges and coping strategies, as well as their experiences navigating health, disability and aged care services. These perspectives also highlight how individuals connect with family, professionals and the wider community, offering valuable insight into what living with MND truly means.
Who is part of the LEN?
The LEN includes over 130 members from across Australia. It includes people living with MND, genetic carriers, and current, or former, carers. Each member brings their own insights and experiences of MND. In turn, creating a forum to improve understanding and support for those affected by MND.
Connect with the LEN
Are you an industry professional wanting to make a real difference in your work? Enrich your work by engaging with people with firsthand experience of MND. Submit a LEN engagement request on the MND Australia website to get started.