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Awareness of Undiagnosed Children

Syndromes Without A Name

SWAN Australia is a not for profit charity which provides information and support to parents/carers who do not have a diagnosis for their child's/children's medical 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 into research to assist more children get a genetic diagnosis. SWAN Australia is endorsed by the Genetic Support Network Victoria and Victorian Clinical Genetic Services.

According to current estimates, 1 in 20 children are born with a genetic disorder, yet we only hear about the most common syndromes, or the ones that receive the most funding or have the biggest lobby groups. 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 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 children, particularly those who are regressing. 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?

  • To promote and facilitate Undiagnosed Children's Awareness Day each year
  • To fund guest speakers such as counsellors and different therapists for parents/carers to enable them to cope better with having an undiagnosed child.
  • Produce and distribute SWAN information packages to parents/cares and other target markets that can benefit from the work of SWAN.

Are donations tax deductible? Yes

Will I receive a receipt for my donation?
Yes, immediately sent to you by email when approved.

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