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.
Prader-Willi Syndrome Australia
Prader-Willi Syndrome Australia pursues an improved quality of life for all people with PWS. We support better outcomes by bringing together people, resources and up to date information.
S.O.F.T. Australia
If you find yourself in the world known as Trisomy then we are here to help. SOFT Australia started in November1996, in a small house in Kirrawee NSW. We are a small community of families supporting each other through the difficult journey of having a child living with, and potentially dying because of a Trisomy condition.
Sotos Syndrome Australasia
The Sotos Syndrome Australasia (Inc.) is a non-profit organisation that provides advocacy for Sotos Syndrome in Australasia.
Spinal Muscular Atrophy Australia Inc.
Spinal Muscular Atrophy Australia Inc. is Australia’s peak body, providing Australians living with Spinal Muscular Atrophy and their families with best practice information care options, resources and choices for themselves or their children, when living with the condition.
Syndromes Without a Name (SWAN)
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.
Trisomy 18 Foundation (USA group)
We envision a future where Trisomy 18 is a preventable and treatable condition and all parents have access to compassionate, knowledgeable care that respects the humanity and potential of their child diagnosed with Trisomy 18.
Van Wright Foundation
Our focus is to raise funds for research into a cure, drive activities that will increase awareness, bring newly diagnosed families together and be involved in the establishment of a register of cases of MECP2 duplication syndrome.