Development of the National Recommendations for Rare Disease Health Care (the Recommendations) was led by the RArEST consortium which includes the University of New South Wales, Rare Voices Australia, University of Western Australia, and Macquarie University, with funding from the Australian Government.
Thank you to everyone who contributed to the Recommendations (Acknowledgements).
The Introduction outlines the context and purpose of the Recommendation and explains how to use the online and PDF versions. The Appendices can be found below. The overview lists all recommendations and sub-recommendations.
Appendices
| Appendix | Title | Content |
| Appendix 1 | Glossary and abbreviations | Definition of terms and abbreviations used throughout this document |
| Appendix 2 | Enablers of good practice | Key resources and online courses |
| Appendix 3 | National and international sources | Key national and international sources consulted when writing these recommendations |
| Appendix 4 | Primary preventive measures during pregnancy | Preventive measures related to antenatal care |
| Appendix 5 | Development of the Recommendations | Overview of the development process for these recommendations |
© UNSW Sydney 2024
Reuse of the National Recommendations for Rare Disease Health Care is authorised under a Creative Commons Attribution 4.0 International (CC-BY 4.0) licence (https://creativecommons.org/licenses/by/4.0/). Please contact Elizabeth Emma Palmer with any queries regarding this publication: [email protected], School of Clinical Medicine, Faculty of Medicine & Health, UNSW Sydney, NSW 2052.
Suggested citation:
Rare Disease Awareness, Education, Support and Training (RArEST) Project. National Recommendations for Rare Disease Health Care (2024). Available at: https://www.rarevoices.org.au/national-recommendations.
The National Recommendations For Rare Disease Health Care have been endorsed by:
and accepted as clinical resources by:
