Syndromes Without a Name (SWAN) » directory

Use this directory to find patient support organisation including condition and diagnosis-specific formal and informal groups and Disabled Persons and Family Organisations.

Search for a particular diagnosis or condition using the search box.

If you are looking for mental health and wellbeing related supports, such as therapists and peer support, please search the Centre of Perinatal Excellence e-COPE directory.

Photo of Syndromes Without a Name (SWAN)

Syndromes Without a Name (SWAN)

Location of support Australia – Nation wide Contact phone: 0404 280 441 Website:

About the organisation

Syndromes Without A Name (SWAN) Australia is a not for profit charity and the peak organisation supporting families who care for a child with an undiagnosed or rare genetic condition.

SWAN Australia knows there is a need to reach out and connect with other families who are on similar journeys to limit isolation. We understand what it is like not to have a diagnosis, to have been misdiagnosed or have a rare genetic condition. That is why our main objective is to provide peer to peer support through our various events:

• Family Days
• Parent Dinners
• Dad’s Group
• Mum’s Group
• SWAN Playgroup
• SWAN Grandparents Group
• Siblings Group (starting July)
• Workshops

We also do systemic advocacy around:
• Obtaining a diagnosis through genetic or genomic testing
• The NDIS
• Disability
• Health and hospitals
• Education

Other ways we support SWAN families:
• Provide care packs for SWAN families in ICU or those who are in hospital for long periods of time.
• Newsletters featuring a parent story and other news relevant for our families
• Social media support
• Buddy system
• Parent telephone support line
• Messenger support

We pride ourselves on our personalised service and will go that extra little bit for our members, particularly in times of need. We strive for all SWAN families to be well supported.

Condition or anomaly

Undiagnosed and rare genetic conditions