05/11/2026
SWAN AUSTRALIA CLOSURE – ONGOING SUPPORT FOR COMMUNITY THROUGH GAA
Statement from SWAN’s Board of Directors
SWAN Australia was founded in 2012 to provide information, support, connection and advocacy to families caring for a child with an undiagnosed or rare genetic condition. We helped to raise awareness about the impact of undiagnosed and rare genetic conditions within the wider Australian community because raising a child with unexplained physical, behavioural or cognitive challenges can be difficult.
After careful consideration the Board has made the decision to cease operations and wind-up SWAN Australia as an incorporated association effective immediately. The “SWAN (Syndromes Without A Name) Australia” Facebook group will remain a space for families to connect, share experiences and support one another. From 5 November 2026, it will no longer be run by SWAN Australia, and moderation will pass to volunteer members of the SWAN community.
While SWAN Australia as an organisation will close, the mission it has championed will carry on. SWAN Australia and Genetic Alliance Australia (GAA) have worked in partnership for many years, and in preparing for this transition the SWAN Board and GAA have worked closely together to make sure SWAN’s advocacy insights, educational resources, and community learnings are preserved. GAA is a national umbrella organisation for the rare, genetic and undiagnosed conditions sector. It will continue advocating for people living with undiagnosed conditions and their families, and providing information, support and connection. The SWAN community can contact GAA’s genetic counsellor-led Genetic Health Navigator service at [email protected].
We are deeply grateful to every child, parent, carer, family member and friend in the SWAN community, who shared this journey with us. We also acknowledge and thank past and present staff, volunteers and Board members who have given their time, expertise and care to SWAN Australia.
If this message has caused distress or raised concerns for you or your family, please know that support is available. The following Australia-wide services may be able to assist: Lifeline Australia on 13 11 14 or at www.lifeline.org.au, Carer Gateway on 1800 422 737 or at www.carergateway.gov.au, and Genetic Alliance Australia at www.geneticalliance.org.au.
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