Who We Are

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About SWAN

Who we are

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.
You can find out more about us by reading our SWAN information sheet, which is also available in Easy English, and viewing our videos.

Our history

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. 

Our vision

We believe every child deserves a diagnosis, optimal care and a family that is supported and empowered. It is our mission to:

  • Secure free and equitable access to genomic testing for all SWAN families, so that children can benefit from better treatment plans and outcomes.
  • To support and empower families.
  • To help children reach their full potential and thrive through social supports, optimal healthcare and the best education possible.

Our goals

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.

What we do

SWAN’s support programs

Our support programs include:

  • A dedicated telephone support and information line
  • Facebook Messenger and email support
  • Telehealth Patient Pathways Nurse
  • Face-to-face catch-ups
  • Virtual catch-ups
  • Virtual Meet the Experts information presentations
  • Connection to other SWAN families caring for a child with the same rare genetic condition.
  • Dads’ group
  • Siblings’ Program
Learn more about the support available for families.
Information and practical resources
SWAN also provides an extensive range of useful information and practical resources on topics including:
Advocacy for the SWAN community
SWAN’s advocacy gives our community a voice. We advocate for SWAN children and families with local, state and federal governments. We aim to achieve better health, disability, education and social support for the SWAN community.
Learn more about our important advocacy for the SWAN community.

Social media

Join our SWAN community on one of our social channels below.

About Syndromes Without A Name
(SWAN) Australia

We are parents
We have a child that is· sick


· has a disability

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.

More information

Call     0404  280  441
Email     info@swanaus.org.au
Website     www.swanaus.org.au
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