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Corona Virus

The Genetic Undiagnosed And Rare Disease (GUARD) collaborative recently conducted a COVID-19 Survey. Did you know that 87% of respondents have been impacted by COVID-19 and 59% believe they are at increased risk of COVID-19? Click our COVID-19 survey results to read our other findings.


Who we are

Syndromes Without A Name (SWAN) Australia is a not for profit charity and the peak organisation supporting families who care for a child with an undiagnosed or rare genetic condition.

Discover more about SWAN Australia and how we were established. Meet our board and understand our mission and vision for the future.


Our work

Learn more about what we do and our purpose and goals. View our SWAN Strategic Plan and submissions to better understand how we advocate for change. And don’t forget to subscribe to our newsletter.

You can learn more about our recent work in our 2018-2019 annual report.


Making a difference

Understand the issues SWAN families face and discover how we advocate for change. You can become involved in
research projects or simply donate to help us support families on their unidagnosed journey.

Stay in Touch! Sign up to our newsletter.



Geneticists are dedicated to diagnosing SWAN children. SWAN families can assist by consenting to have their child’s details entered into POSSUM (Australian genetics database) as either an undiagnosed or as a specific rare disease (if known). SWAN families will also be able to nominate if they would like their child’s details uploaded to international databases. This will assist with more SWAN children obtaining a diagnosis.



Did you know we have a dedicated parent support line? Please T: 0404 280 441 or email [email protected] if you would like some support or more information.

SWAN keeps an iPad at RCH Melbourne for members to use whilst staying overnight in hospital. If you would like to book the iPad you can do so here.



We have a lot of information on our website including helpful videos and presentations. For more information, please contact SWAN Australia of consult our useful website links.

Genetic and genomic testing is advancing all the time. The Melbourne Genomics Health Alliance have an excellent Genomics Patient Guide which answers many questions about genomics testing.



We advocate for systemic change to make genome sequencing available on a clinical basis. Click here to learn more about our advocacy work.

Become A Member

Become a Member

Join SWAN today and support undiagonosed children and their families. Membership is free for SWAN families.

About Us

About Us

SWAN Australia provides information and support to parents/carers who have a child with an undiagnosed or rare genetic condition

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