The National Recommendations for Rare Disease Health Care

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

AppendixTitleContent
Appendix 1Glossary and abbreviationsDefinition of terms and abbreviations used throughout this document
Appendix 2Enablers of good practiceKey resources and online courses
Appendix 3National and international sourcesKey national and international sources consulted when writing these recommendations
Appendix 4Primary preventive measures during pregnancyPreventive measures related to antenatal care
Appendix 5Development of the RecommendationsOverview 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:

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This resource has been endorsed by APNA according to approved quality standards criteria. Completion of this resource entitles eligible participants to claim 2 CPD hours
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The National Recommendations for Rare Disease Health Care have been officially recognised as an Accepted Clinical Resource by The Royal Australian College of General Practitioners

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