Rare Diseases NSW is dedicated to advancing the knowledge and capacity of healthcare professionals to deliver high-quality, integrated care with and for individuals living with rare diseases. With strong connections to educational and community organisations, we strive to be leaders in comprehensive rare disease care.
Many of the resources featured on this page were developed through a Department of Health, Disability and Ageing grant awarded to UNSW, in partnership with Rare Voices Australia. This has been extended twice due to the high quality of the resources we have created.
Rare Diseases NSW led the Clinical Education stream, collaborating with people with lived experience and interdisciplinary health professionals to co-create the disease-agnostic tools linked below.
This year, we are focused on three big areas of need:
If you are interested in working with us on any of these projects, please send us an email.
This page also offers a variety of valuable resources developed through other initiatives, to support healthcare professionals in their work caring for people living with rare diseases.
This nine-lesson online module is free to take. Co-designed as part of the RArEST project and intended for all health care professionals, it aims to introduce the key considerations for providing high-quality care for people living with rare disease.
The Recommendations were developed through a multi-stakeholder collaboration as part of the RArEST Project. They aim 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 website for the Recommendations includes full and summarised PDFs as well as a navigable online version. You can also download the Recommendations as a printable infographic
Emerging from the RArEST Project, the Rare Disease Project ECHO Community of Clinical Learning Practice runs semi-regular series of online meetings that involve case-presentations and meaningful discussion. Summaries of these meetings are posted on the Rare Voices Australia website.
The inclusive GeneEQUAL program is a collaboration between the Disability Innovation Institute, UNSW Medicine and Health and UNSW Art, Design and Architecture.
This project aims to develop a world-leading inclusive, person-centred and respectful genetic model of care for people with intellectual disability, and to co-produce point-of-care resources and education for healthcare professionals such as the NSW Health Centre for Genetics Education GeneEQUAL Toolkit. We have attracted funding from NSW Health and the National Health and Medical Research Centre.
As part of the RArEST Project, Rare Voices Australia led the development of this series of animated case studies that effectively communicate the mental health and wellbeing challenges faced by many people living with rare disease. These short videos can help clinicians understand the rare disease journey and learn directly from people with lived experience about the type of support they find useful.
The Rare Awareness Rare Education (RARE) Portal is your “one-stop shop” for Australian Rare Disease Resources. Designed for the rare disease community and for health professionals, the portal contains co-designed information and resources on an extensive (and growing) list of rare diseases.
A division of the NSW Health Education & Training Institute, the CGE aims to promote the responsible and effective integration of genetic technologies into healthcare and public policy. It serves as a hub for healthcare professionals, educators, and the general public, offering up-to-date information and guidelines on genetic testing, counselling, and the ethical considerations involved.
