It’s hard enough when your child has a genetic condition, let alone when you have no idea what that condition is.
Syndromes Without A Name (SWAN) Australia was established in late 2012 with the aim of assisting parents who have a child with an undiagnosed or rare genetic condition.
The organisation provides opportunities for members to engage in peer-to-peer supports that limit the isolation, frustration and anxiety often felt by SWAN families.
SWAN aims to increase awareness and understanding of the impact and prevalence of undiagnosed genetic conditions within the community and advocate for further funding into genetic research and testing. Most importantly, SWAN are more than just a support group for families who have a child with an undiagnosed or rare condition—they’re a united family.
One of SWAN’s main objectives is to connect families across Australia with others in the same situation, creating safe spaces for families to relax and meet other parents.
That’s why EPIC recently supported SWAN with a community grant.
SWAN Australia spokesperson Heather Renton said the organisation would use the grant to fund morning tea networking events for their members in Brisbane and surrounding areas.
“We want to limit the isolation amongst our Brisbane members by providing opportunities for them to meet with other SWAN members for support. Our families have children with high medical needs and complex disabilities, and we want to support them,” Heather said.
The morning teas will allow SWAN children the opportunity to connect with one another and provide support to their parents/carers by increasing social interaction.
If you know an organization who could benefit from EPIC’s community grants program, learn more and apply today.
