Providing information and support to families caring for a child with an undiagnosed or rare genetic condition.
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:
CEO Heather Renton founded SWAN Australia in 2012. She was inspired by her daughter who has the neurodevelopmental disorder, FOXP1 syndrome. Before her daughter’s diagnosis, Heather was looking for a support group. There was none. She discovered SWAN organisations in the UK and USA and decided to start a chapter in Australia. “My mother brought me up with the attitude that if you don’t like something, you should try and do something about it, not simply whinge!” Heather says. Today, SWAN Australia gives support and information to members across the country and is the peak national organisation advocating for the SWAN community.
We believe every child deserves a diagnosis, optimal care and a family that is supported and empowered. It is our mission to:
Empower parents with the knowledge to seek out genomic testing and related social services for their children.
Collaborate with geneticists, paediatricians, clinicians, genetic counsellors, general practitioners, maternal and child health nurses and other stakeholders to support SWAN families.
Advocate for better resources, pathways and support services based on needs, not on diagnoses.
Influence governments to deliver more funding for genetic research and further Medicare-funded testing to achieve faster and more accurate diagnoses.
Educate teachers, service providers, governments and medical experts about the struggles that SWAN families may face and how best to support them. We also raise awareness of undiagnosed and rare genetic conditions in the broader community.
Support parents via our networks, helping them to connect with other SWAN families and build supportive relationships through shared experiences.
Provide parents with practical information and emotional support through phone discussions, face-to-face meetings and seminars, where they can learn more about the support structures available to them.
Our support programs include:
Join our SWAN community on one of our social channels below.
About Syndromes Without A Name
|We are parents|
|We have a child that is· sick
No body knows why
|Very few children are sick like this|
|We help other parents that may
· feel alone
· be scared
· do not know how to feel
|We do things with other SWAN families.|
|We do things with other SWAN parents.|
|Call 0404 280 441|