The MND Research Collective was launched in 2020 and is a concept co-designed with around 50 experts from lived experience, medicine, healthcare, and research.
The MND Research Collective is not a new entity or organisation, but rather the coming together of existing groups, organisations and stakeholders under a shared focus and vision and with a common agenda. MND Australia, FIghtMND and MND and Me are jointly committed to increasing communication, efficiencies and find synergies with the goal of bringing about meaningful change in the space at a quicker pace and are using the Collective as the mechanism for doing so.
In 2026 the Collective wants to build upon solid foundations and relaunch in September at the National MND Conference in Adelaide. Please sign up to keep up to date with exciting developments as the aim is to be a Collective in more than name. It aims to encourage and facilitate a collective approach that enables better outcomes for people living with MND.Become a member of the Collective - Researchers and Professionals
Be kept up to date on the Collective - Lived Experience
What is the structure of the MND Research Collective?
The Collective is structured to be collegiate, collaborative and an environment to foster innovation. The Collective Board has representation from MND Australia, FightMND, MND and Me and representation from the State Associations. Please see here for more information on the sub committees:
- Discovery Research Expert Driving Team
- Clinical Care Expert Driving Team
- Lived Experience Research Advisory Panel
Considered a rare disease, MND has not received the attention and funding needed to enable researchers and healthcare practitioners to advance their understanding of the disease, develop and provide access to promising treatments, and ensure delivery of equitable best practice standard of care.
The establishment of the MND Research Collective provides an opportunity for a united voice to campaign for change and investment in MND care and research. It provides an opportunity to elevate the voices of those with lived experience of MND, discovery and clinical researchers and allied health professionals.
The Collective provides a critical mechanism for communication across all of those affected by and working in the MND space. This communication will increase opportunities and efficiencies and reduce duplication.
The MND Research Collective, is free, open and looking to increase membership.
Membership is free and is open to MND researchers, MND professionals. Individuals with lived experience please sign up to the wider Lived Experience Network. As a member of the MND Research Collective, you will receive regular email updates, the potential to join the subcommittees when vacancies arise and our quarterly newsletter. To sign up to be a member please fill in the registration form.