Syndromes Without A Name (SWAN) Australia

SWAN Australia is a national organisation providing information, support, connection and advocacy to families caring for a child with an undiagnosed or rare genetic condition. We are a not-for-profit registered charity dedicated to providing practical and emotional support and information to SWAN families. We also raise awareness about the impact of undiagnosed and rare genetic conditions within the wider community.

Raising a child with unexplained physical, behavioural or cognitive challenges can be difficult. Parents can feel isolated, angry, confused, helpless, distressed. SWAN Australia is here to help. We work across three main areas:

Our peer support network is here to bring families together and share experiences. SWAN provides a critical social hub where parents and carers can mix with like-minded families, seek peer support and lend comfort and advice.
We also provide practical information to help families access health and support services and navigate the complex web of diagnostic testing pathways.

Our advocacy work gives SWAN families a voice. We raise the profile of SWAN children and put their needs on the public agenda. Areas we focus on include free access to genomic testing, increased genetic research and improved disability support services so that SWAN children can thrive.

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