This page links you to the rare disease support group in Western Australia. We have also provided a link to the Australian rare disease advocacy group, Rare Voices Australia.
Under each organisation is a sub-network of the different organizations focusing on specific rare diseases. Explore the different pages to find out more about what each of these group represents.
This page is a work in progress to provide up-to-date information about various rare disease groups across Australia. Feel free to drop us a message if you feel strongly about including a particular rare disease group here.
GaRDN (Genetic and Rare Disease Network – Based in WA)
The mission of GaRDN is to promote and develop awareness of genetic conditions and their impact on families and community, foster research, encourage and support service delivery by genetic support groups and facilitate their development by linking and empowering individuals, families and communities.
Click on the name to find out more about the network.
Rare Voices Australia (RVA) is Australia’s non-profit, national peak organisation advocating for all who live with a rare disease. RVA provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare diseases. Patient-centred, RVA works with all stakeholders including patients, key peak bodies, governments, researchers, clinicians and industry to promote rare disease research, diagnosis, treatment and services.
Click on their name to find out more about the organisation and how you can participate in advocating for those living with rare diseases.