Syndromes Without A Name (SWAN)

SWAN Australia provides information, support, connection and systemic advocacy for families caring for a child with an undiagnosed or rare genetic condition. We provide information sessions, peer-to-peer events, and networking opportunities to help SWAN families learn, advocate, connect and reduce the pain of isolation, frustration and anxiety. 

 

SWAN advocates for increased funding for genetic research, timely free and equitable access to genomic testing and decreased waiting periods for families to receive a diagnosis. We provide a public voice for families, campaigning for improved disability services, better community education and greater resources and pathways so SWAN children can thrive. 

 

More info at SWAN Australia