National Forum on End-of-Life Care for People Living with MND
Description
National Forum on
End-of-Life Care for People Living with MND
A 2025 national survey revealed the deep exhaustion and frustration of MND bereaved family carers and the urgent necessity for more proactive, coordinated, compassionate healthcare and community responses.
The purpose of this National Forum is to co-design an integrated, equitable and evidence-informed standard approach to end-of-life care for people living with MND — grounded in family carer experience.
WE INVITE
People with lived experience
Health & social care professionals from MND, palliative & community care
Representatives from disability & aged care sectors
Government representatives
Relevant NGOs
MND researchers and clinicians
FOCUS AREAS
Early integration & improved access to palliative care
Family carer psychosocial & bereavement support, including death & grief literacy
Workforce capability & clinical system redesign
Professional training & education in all care settings
Funding inequity and reform
INTENDED OUTCOMES
1. An implementation plan for cross-sectoral collaboration between health, disability, aged care systems and the community
2. A national reform and advocacy agenda with post-forum action plans detailing who does what and in which timeframe
DATE: Wednesday 5 August 2026
TIME: 9:30 am – 4:30 pm AEST
VENUE: PARKROYAL Hotel
Melbourne Airport
Numbers are limited - register by 30 June 2026
Queries: samar.aoun@perron.uwa.edu.au
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