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.
We will use funds to provide information and support to SWAN families in a variety of ways
Your kind donation will be used to provide information and support material
Approximately 10% of our funds will be used to support administration overheads
Yes
Yes, as soon as your donation is processed.
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.
We will use funds to provide information and support to SWAN families in a variety of ways
Your kind donation will be used to provide information and support material
Approximately 10% of our funds will be used to support administration overheads
Yes
Yes, as soon as your donation is processed.
