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Syndromes Without A Name (SWAN) Australia

Awareness of undiagnosed and rare genetic conditions

Syndromes Without A Name (SWAN) Australia provides information, support and systemic advocacy for families caring for a child with an undiagnosed or rare genetic condition. We are the peak not-for-profit organisation representing approximately 2500 children born without a diagnosis every year, and the 1 in 12 children diagnosed with a rare genetic disorder.

Of the children who present to a geneticist with syndromic features, 40 to 60 per cent may never receive a diagnosis, which is heartbreaking, especially if the child has a regressive condition. Our mission is to increase community awareness and understanding about the impact and prevalence of rare and undiagnosed genetic conditions. 

We are here to help reduce the isolation and emotional strain of raising a child with different needs by helping parents connect with other SWAN families. We provide parent information seminars and workshops, peer support events and social networking opportunities where SWAN families can form lifelong bonds. SWAN also advocates for improved disability support services, free and equitable genetic and genomic testing, and increased research funding to ensure more children can obtain a diagnosis. 

We provide a public voice for our families, campaigning for better community education and improved resources and pathways so that SWAN children can thrive.

How will the funds be used?

We will use funds to provide information and support to SWAN families in a variety of ways

  • Peer Support and Information Service telephone line

  • Education and information workshops for SWAN parents

  • Hospital care packs for SWAN children 

  • Meal vouchers for parents who have SWAN children in the hospital to show that we care

  • Virtual events, including our “Meet the Expert Series” which support SWAN parents

  • Face-to-face events such as family days and parent social events to support parents' mental health and wellbeing

  • Social media support

  • Education and awareness of undiagnosed and rare genetic conditions 

Your kind donation will be used to provide information and support material

  • Educational brochures for both families and health professionals

  • Develop new website information and social media content, including video resources

Approximately 10% of our funds will be used to support administration overheads


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Contact Details

PO Box 390


Are donations tax deductible?


Will I receive a receipt for my donation?

Yes, as soon as your donation is processed.

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