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Supporting children with undiagnosed or rare genetic conditions.

Syndromes Without A Name (SWAN) is a community of unique children and their families. We provide information, support and systemic advocacy for families caring for a child with an undiagnosed or rare genetic condition. In Australia, we estimate around 2500 children are born with an undiagnosed condition every year.

Support For you And Your Family

SWAN Australia is here to help families connect, access critical health care and support services and navigate the complex web of diagnostic testing.

Become A Member

If you are caring for a child with an undiagnosed or rare genetic condition, become a SWAN member today and benefit from our supportive community of families. Receive practical support and information and enjoy opportunities to meet other SWAN families.

Donate

Give the gift that helps change lives by donating to SWAN. Your generous contribution will help us continue to support SWAN families and advocate for their complex needs in the broader community.

Information

Learn about genetic and genomics testing. We have a range of useful resources, videos and presentations. Still have questions? Please email [email protected] or phone 0404 280 441

Support

Book an appointment with our Telehealth Patient Pathways Nurse, join us at an upcoming peer support or information event, or use our practical resources. Find out more about the support available for you and your family here.

Advocacy

SWAN advocates on a range of health and disability issues, including genomics and the NDIS. Click here to learn more about our advocacy work.

Easy English

Easy English information is available on the following pages: Who We Are, Genetic and Genomic Testing, Finding a Diagnosis and Siblings. Below is an example Easy English button. It will not work on this page. To activate the Easy English pages of our resources, click on the slide button on the specific pages that feature the Easy English button.

Enable Easy English.
Our Easy English resources are written with everyday words, simple sentences and pictures.

What's in a diagnosis?

An undiagnosed genetic condition is a rare disease that is thought to be genetic, but where the specific cause of the condition’s symptoms, signs or characteristics are not known.

Sometimes geneticists cannot find a diagnosis for our child. This can be heartbreaking and leave us feeling numb, confused and even more anxious. We can struggle to find the right direction to take and know how to support our child’s growth and development. Our children’s medical conditions, physical condition, cognitive processes and behaviours might not make sense. It may be difficult to connect and engage with our children and the wider community.