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.
S.O.F.T. Australia
About the organisation
If you find yourself in the world known as Trisomy then we are here to help. SOFT Australia started in November 1996, 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.
S.O.F.T. Australia exists to support families and individuals, without judgement in whatever way we can through a network of families who share similar experiences and professionals who wish to assist. We actively promote research into all aspects of trisomy, including causes, prenatal diagnosis, caring for a child with a trisomy condition, and the emotional well being of the family unit and extended family.
We have biannual family conferences. A time to get together have some laughs, educate ourselves and others, while meeting new people. We also try to incorporate some time for reflection on those we have lost and celebration of those still with us.
— From the S.O.F.T. website.
Condition or anomaly
Trisomy 13, Trisomy 18, Edward’s syndrome, Edwards, Patau syndrome