National Recommendations for Rare Disease Health Care

The National Recommendations for Rare Disease Health Care (the Recommendations) were written to help health professionals provide quality care for people living with rare disease, including people with a diagnosed rare disease and those who have not yet received a diagnosis. The Recommendations are aligned with the Australian Government’s National Strategic Action Plan for Rare Diseases. 

The Recommendations may be helpful for:

  • Health professionals – to provide better care for people living with rare disease 
  • People living with rare disease – to help in partnering with their health care team to plan the type of health care that works best for them 
  • Policy makers – to help shape health care policy relating to rare disease 

Click on the tiles below to explore the digital version of the recommendations or download a summary or infographic

Cover of a report titled “National Recommendations for Rare Disease Health Care,” published by the RAREST Project (Rare Awareness, Support, Education, and Training). The cover has a light beige background with bold, handwritten-style “RAREST” text at the top. On the right side, layered abstract shapes in yellow, green, blue, and red create a flowing pattern. In the lower left foreground, a detailed black-and-white illustration of two zebras—one larger and one smaller—stands prominently. The title text appears in dark font, with “Rare Disease Health Care” emphasized in larger, bold lettering.

The National Recommendations for Rare Disease Health Care

A navigable version of the recommendations [coming soon] and a downloadable PDF version.

This will be useful for health professionals or anyone wanting to explore the recommendations in detail.

Cover of a summary report titled “National Recommendations for Rare Disease Health Care,” published by the RAREST Project (Rare Awareness, Support, Education and Training). The cover has a light blue background with the RAREST logo and name at the top. On the right side, large abstract shapes in yellow, green, blue, and a small area of red form a flowing pattern. On the left foreground, a detailed black-and-white illustration shows two zebras, one larger and one smaller, standing together. A small blue label reading “SUMMARY” appears beneath the title text.

Overview of Recommendations

Download a PDF of the summary version of the National Recommendations for Rare Disease Health Care.

Enablers of Good Practice (Appendix 2)

Download a PDF of a collection of resources designed to help health professionals put the National Recommendations into practice.

Recommendations on a Page

Infographics and booklet files that can be downloaded and printed for quick reference.

The Recommendations were developed as part of the Rare Disease Awareness, Education, Support and Training (RArEST) Project, a collaboration between Rare Voices Australia, the University of New South Wales, Macquarie University, and the University of Western Australia, and funded by the Australian Government.  

Collaborative development of the Recommendations

The Recommendations were written by a Working Group that included specialist doctors, general practitioners (GPs), nurses, educators, rare disease advocates, and academics.

A range of people read and provided input into the Recommendations, including patient advocacy and support groups, people living with rare disease and their families/carers, doctors, nurses, and educators.

and accepted as a clinical resource by:

RACGP endorsement badge showing a red rounded rectangle border. On the left, a solid red panel displays the white text “Accepted clinical resource.” On the right, a white panel features a detailed heraldic crest alongside the grey and blue text “RACGP,” which stands for the Royal Australian College of General Practitioners.

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.