Links and Resources

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. 

eLearning for health professionals

In collaboration with UK charity Medics 4 Rare Diseases, the RArEST project developed a series of eight modules designed to introduce health professionals to principles for high quality health care for people living with rare disease. Infused with the perspectives of those with lived experience, this eLearning will equip you to consider the common challenges shared by those living with rare disease.

Rare Voices Australia (RVA) is the national peak body for Australians living with a rare disease. RVA’s partners include over 100 different rare disease organisations. 

On the RVA website, you will also find the National Strategic Action Plan for Rare Diseases which was adopted by the Australian Government Department of Health in 2020.

The Australian Alliance for Rare Diseases (AARD) is a network of diverse partners taking national leadership in rare disease research, education, and training.

Working in partnership with those with lived experience and other organisations, AARD seeks to fill the current gaps in national coordination and infrastructure for rare diseases, while also leveraging national and international collaborations.