Taking Action Together Toolkit

Improving Health and Wellbeing Outcomes for Australians Living with a Rare Disease

This Toolkit was developed to show how the Australian rare disease sector has worked effectively together to advocate (speak up) for systemic change for people living with a rare disease. The Toolkit begins with case studies describing how Australian organisations brought about systemic change. It then describes four key approaches used by these organisations that may help with effective systemic advocacy, including tools that may be useful to practically apply these approaches.

Companion documents

Acknowledgements

Acknowledgement of Country

We acknowledge and pay respects to all Aboriginal and Torres Strait Islander peoples across Australia, past and present. We acknowledge this document was designed and produced on Aboriginal and Torres Strait Islander land. We acknowledge the Traditional Owners of Country and recognise their continuing connection to lands, waters, and communities.

Suggested citation: Rare Disease Awareness, Education, Support and Training (RArEST) Project. Taking Action Together Toolkit. Improving Health and Wellbeing Outcomes for Australians Living with a Rare Disease (2024). Available at: https://rarevoices.org.au/taking-action-together-toolkit/

© UNSW Sydney 2024

Reuse of the Taking Action Together Toolkit. Improving Health and Wellbeing Outcomes for Australians Living with a Rare Disease is authorised under a Creative Commons Attribution 4.0 International (CC-BY 4.0) license (https://creativecommons.org/licenses/by/4.0/). Please contact Rare Voices Australia with any queries regarding this publication: [email protected]

Last Updated: June 2024

We thank the organisations and groups that contributed to the Toolkit, including:

RArEST Stakeholder Reference Group

Andrew Bannister
Anita Busteed
Angela Famiano
Amanda Gilpin
Jo Hargreaves
Saskia Holloway
Christine Jeffrey
Matthew Treanor

RArEST Australian Rare Disease Organisation Community of Practice

Wendy Bruce – Fragile X Association of Australia
Sheridan Campbell – Fabry Australia
Dalal Dawood Baumgartner – SATB2 Connect
Leanne Dib – Children’s Tumour Foundation of Australia
Kerren Hosking – Sanfilippo Children’s Foundation
Kathleen Jones – Prader-Willi Research Foundation Australia
Joanne Kershaw – Childhood Dementia Initiative
Hayley Lethlean – Neuromuscular WA
Ruth Lindsay – Children’s Tumour Foundation of Australia
Clare Stuart – Mito Foundation
Susan White – Myasthenia Alliance Australia

Mito Foundation

SATB2 Connect

Sydney Children’s Hospitals Network, Randwick

Rare Voices Australia

Australian Institute of Health Innovation, Macquarie University

University of NSW Sydney

University of Western Australia

Rare Care Centre, Perth Children’s Hospital

Logo of Rare Voices Australia
Fabry Australia logo
NeuromuscularWA logo
mito foundation logo