The Neurodegenerative, Palliative Care and Rare Diseases Advisory Group was established in May 2024 to provide strategic advice to the NDIA on a set of defined issues relating to participants with neurodegenerative, neuromuscular or rare conditions, or those requiring palliative care.
Membership
Membership includes representatives intended to reflect the diversity of the neurodegenerative disorder, palliative care and rare conditions communities.
Consideration is also applied with a view to geographic and gender diversity, as well as having a minimum of two people with neurodegenerative disorders as members of the group.
Current members:
- Olivia Nassaris – Parkinsons Australia (Co-Chair)
- Katie Snell – National Policy Manager MS Australia
- Anne Wilson – Emerge Australia
- Clare Stuart – Mito Foundation
- Kylie Miskovski – Dementia Australia
- Megan Maack – Childhood Dementia Initiative
- Fiona Lawton – Rare Voices
- Dr Bronwyn Morkham – Young people in Nursing Homes (YPINH)
- Camilla Rowland – Palliative Care Australia
- Josh Fear – Palliative Care Australia
- Sarah Spiller - Palliative Care Australia
- Kate Johnson – MND Australia
Meeting Summaries
January 2025 meeting summary
The Neurodegenerative, Palliative Care and Rare Diseases Advisory Group met online on 29 January 2025.
Read the full January 2025 meeting summary.
November 2024 meeting summary
The Neurodegenerative, Palliative Care and Rare Diseases Advisory Group met online on 25 November 2024.
Read the full November 2024 meeting summary.
September 2024 meeting summary
The Neurodegenerative, Palliative Care and Rare Diseases Advisory Group met online on 24 September 2024.
Read the full September 2024 meeting summary.
May 2024 meeting summary
The Neurodegenerative, Palliative Care and Rare Diseases Advisory Group met online on 23 May 2024.
Read the full May 2024 meeting summary.