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Syndromes Without A Name (SWAN) Australia

Awareness of undiagnosed and rare genetic conditions


SWAN Australia is a not-for-profit charity which provides information and support to families caring for a child with an undiagnosed or rare genetic condition. We offer parent information seminars with guest speakers and a chance for parents to network with like-minded parents in social settings. We advocate for better resources and more funding for research to assist more children to get a genetic diagnosis. SWAN Australia is endorsed by the Genetic Support Network Victoria and the Victorian Clinical Genetic Services.

According to current estimates, 1 in 12 children are born with a rare genetic disorder, many of them undiagnosed. We often only hear about the more common genetic syndromes, or support groups that are well established. SWAN needs your help to not only raise awareness of the large number of children living with an undiagnosed or rare genetic condition but also to support us financially so we can continue our important work of supporting families. We are staffed by a committee of 5 volunteers and have no paid employees. Our committee is passionate about supporting families who experience isolation, anxiety, confusion and uncertainty, just some of the emotions that come when nobody can give you an answer about what the future might hold for your child.

Of those children who present to geneticists with syndromic features, 60% may not ever receive a diagnosis. Imagine what it would be like to have a child with a syndrome without a name and an unknown future.

We aim to increase community awareness of the large number of children who do not have a diagnosis. The facts are that medical science is not moving fast enough and is too expensive or not accessible enough for Australian SWAN children, particularly those who have regressive conditions. Other children may have; complex medical needs, intellectual, physical, communication, behavioural and sensory difficulties. The future for thousands of children who are undiagnosed is a mystery.

How will the funds be used?

  • Provide information and support to SWAN families; SWAN parent telephone support & information line, networking events, peer to peer support opportunities eg. parent dinners, morning teas, family events

  • To produce and update marketing material; brochures, videos, podcasts and website and social media content aimed at supporting not only families but also professionals who care for SWAN children

  • To promote and facilitate Undiagnosed Children's Awareness Day in March each year

  • To fund SWAN guest speakers; counsellors, geneticists and different therapists to support parents in caring for a child with an undiagnosed or rare genetic condition

  • Approximately 10% of our funds will be used to purchase merchandise (to sell), marketing material and cover administration overheads

Help Syndromes Without A Name (SWAN) Australia to reach their goal of $50,000

$28,213 raised

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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.