There are a number of open consultations seeking feedback from the MND community.
Highlighting the lived experience of people living with MND is an important way to contextualise research and help deepen an understanding of the realities faced by people in the MND community.
The Australian MND Guideline
The Australian Motor Neurone Disease (MND) Guideline Development Panel and Health Evidence Synthesis, Recommendations and Impact (HESRI) are inviting people living with MND, families and carers, health professionals, service providers, and community organisations to review and comment on the first version of draft recommendations from the Australian MND Care Guideline.
The MND Care Guideline will provide practical, evidence-based recommendations to support MND care across all stages and settings.
This round of feedback relates to medications and diagnosis. It closes on 1st June 2026.
Learn more:
Disability and Housing in Western Sydney
The Western Sydney Community Forum is developing a publication on priorities and challenges in housing for people with disability. The publication will be used to advocate for people with disability living in the diverse Western Sydney region, as well as identify key priorities for addressing this issue in Western Sydney.
If you live in Western Sydney, you can complete the questionnaire and have your say. It closes on 8 June 2026.
Learn more:
Focus Group: Do you have experience with Supported Independent Living (SIL)?
Supported Independent Living (SIL) is help or support with daily tasks in your home for people with higher support needs to live as independently as possible, while building your skills. The National Disability Insurance Scheme (NDIS) is running focus groups to understand how the NDIS can help SIL providers give better, more consistent support to participants.
You can express your interest in sharing your experience in the focus groups, if you are a NDIS participant, plan nominee, family member or carer of NDIS participants who:
- has Supported Independent Living (SIL) funded in their NDIS plan
- or, is currently receiving 8 or more hours per day of Assistance with Daily Life supports
- and, can share their experiences of receiving SIL or Assistance of Daily Living Supports
Expressions of interest close on 31 May 2026
Learn more:
Provide feedback to MND NSW
MND NSW appreciates feedback from our participants, their families and carers so we can improve our supports and services. You can submit feedback to us at any time, via phone, email, or our online form.
Learn more or submit a feedback form:
Summary
Helping to review and improve systems like the NDIS, national frameworks, and housing is a powerful way to shape the future of MND that is grounded in the real-world experiences of people living with MND and their families. Thank you for taking the time to provide your feedback on matters that are important to you.
