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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.

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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.

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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.

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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.

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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.

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.

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Genetic undiagnosed and rare disease patient pathways nurse

Our telehealth patient pathways nurse is a free and confidential information support service for SWAN families living in Australia.

Upcoming Events

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SWAN Disability Transition Conference

Our conference features a number of speakers with lived experience of caring for a child with a disability.

Please join us for our virtual SWAN Disability Transition Conference through Zoom. Our conference features several speakers talking on a variety of topics, including ECIS, kinder, school, disability supports, puberty and post-school options. Our full conference program will be available shortly and sent in advance to all registered participants.

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SWAN Disability Transition Pre-Conference Dinner

Please join SWAN members for a relaxing pre-conference dinner. This is a great opportunity to get to know other SWAN members and share a laugh, information and stories.

Please click on the buttons below to register for the dinner closest to your home.

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20 September 2021
SWAN informal virtual chat session with members
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29 Sepember 2021
SWAN informal virtual chat session with members who have a SWAN child over 10 years old
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31 August 2021
SWAN informal virtual chat session with members
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16 August 2021
SWAN informal virtual chat session with members who have a SWAN child over 10 years old

Upcoming Events

virtual events image2
20 September 2021
SWAN informal virtual chat session with members
virtual events image1
29 Sepember 2021
SWAN informal virtual chat session with members who have a SWAN child over 10 years old
virtual events image2
31 August 2021
SWAN informal virtual chat session with members
virtual events image1
16 August 2021
SWAN informal virtual chat session with members who have a SWAN child over 10 years old

Stay in Touch!

Be the first to hear about our news, events and advocacy campaigns by signing up for our newsletter. We will keep you informed about everything that’s happening in the SWAN community with regular updates direct to your inbox.

Signing up for our newsletter is not the same as becoming a member of SWAN. Our membership is open to all SWAN parents and full-time carers. Simply fill in our online membership form. If you have signed up to become a SWAN member, you will automatically receive our newsletter and do not need to subscribe here.

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