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 aim to increase awareness and understanding of the impact and prevalence of undiagnosed and rare genetic conditions within the community.
We offer parent information seminars, workshops and peer support events, which provide families with a chance to network and connect with likeminded families in social settings for information sharing and support.
SWAN families often struggle with their child’s unknown future. They experience isolation, frustration and anxiety, emotions that come from caring for a SWAN child. There is a lack of support for undiagnosed and rare genetic conditions which can have social, emotional and financial impacts on SWAN families.
We advocate for better resources and further funding into genetic research and testing, so that more testing is available, testing turnaround times reduce and more accurate results are achieved. We strive to obtain better resources and future pathways for our SWAN children.
Our office is run predominantly on the good will of volunteers and we do our best, however we need more assistance to be able to support more families.