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Who we are

Syndromes Without A Name (SWAN) Australia provides information and support to families who have a child with an undiagnosed or rare genetic condition.

Discover more about SWAN Australia and how we were established. Let us introduce to our committee and discover our mission and vision for our future.


Our work

Learn more about what we do and our purpose and goals. Have our read of our strategic plan and read our submissions to get an understanding of how we advocate for change. And don’t forget to subscribe to our quarterly newsletters.

You can learn more about our recent work in our 2016-2017 annual report


Making a difference

Understand about the issues that SWAN families face and discover how we advocate for change.  You can partake in a research projects or simply just donate to make a difference so we can assist more families on their undiagnosed 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 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.

You can read our Victorian State Election Campaign 2018 and the significant issues of concern for SWAN families.

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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