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.

Page 1 Page 2
Photo of 22q Foundation Australia and New Zealand

22q Foundation Australia and New Zealand

Here to inform, to educate and to raise awareness of 22q11.2 Deletion Syndrome & provide basic information on other 22q related conditions.

Photo of Angelman Syndrome Association Australia

Angelman Syndrome Association Australia

Angelman Syndrome Association Australia is a volunteer committee consisting of family members of people living with Angelman syndrome (AS). The committee dedicate their time and expertise to supporting families, working with other rare disease and Angelman organisations, and advocating at all levels of government, to create a better world for people living with Angelman syndrome.

Photo of AusDoCC


Recognition, Opportunities, Access and Resources (ROAR) for all people with a disorder of the corpus callosum.

Photo of Australian X and Y Spectrum Support

Australian X and Y Spectrum Support

AXYS Australia is a
not for profit organisation run by volunteers who have a direct link to someone with an X & Y chromosome variations. We are individuals, parents or families who are continuously working hard to support, empower and inform.

Photo of CDH Australia

CDH Australia

We’re the only Australian charity providing support for families, friends and medical professionals affected by Congenital Diaphragmatic Hernia (CDH). We support families throughout their CDH journey; expectant parents of a baby diagnosed with CDH, families caring for a CDH child, adults with CDH and bereaved families.

Photo of Charcot-Marie-Tooth Association Australia Inc.

Charcot-Marie-Tooth Association Australia Inc.

The Charcot Marie Tooth Association Australia Inc. (CMTAA) began as a Support Group in 1988, and was incorporated in 1990 as a registered charity.

Photo of CHARGE Syndrome Australia

CHARGE Syndrome Australia

CHARGE Syndrome Australasia was established in 1994 and is the only volunteer not-for-profit support group dedicated to improving the lives of individuals with CHARGE syndrome, in Australasia.

Photo of CleftPALS NSW


CleftPALS is a volunteer based non-profit organisation of parents and professionals involved in the treatment of the cleft condition.

Photo of CleftPALS Vic

CleftPALS Vic

CleftPALS is a group of volunteers, mostly parents of cleft-affected children or cleft affected adults

Photo of CleftPALS WA


CleftPALS WA is a voluntary support group consisting of parents of children born with a cleft, adults born with a cleft and professionals who care for children born with cleft conditions.

Photo of CMV Australia

CMV Australia

For many people, a congenital CMV diagnosis for your baby is a life-changing event. We hope this information will help.

Photo of Cri du Chat Support Group of Australia Inc.

Cri du Chat Support Group of Australia Inc.

Welcome to the Cri du Chat Support Group of Australia. While an unexpected diagnosis may feel frightening, we would like you to know that there is an active group of families across Australia, and the world, keen to welcome you and to offer information, friendship and support.

Photo of Cystic Fibrosis

Cystic Fibrosis

Cystic Fibrosis Australia is the peak consumer body for people living with cystic fibrosis. We focus on collaborative programmes and research, funding partnerships and advocacy.

Photo of Down Syndrome Australia

Down Syndrome Australia

The Down Syndrome Federation provides a range of supports and services for people with Down syndrome, their families and supporters.

Photo of Duplication Cares

Duplication Cares

Supporting Individuals and Families Impacted by 7q11.23 Duplication. After diagnosis, families are not sure where to turn for answers. We’ve walked in your shoes and we can help.

Photo of Fabry Australia

Fabry Australia

Fabry Australia is a patient lead non-profit patient organisation founded in 1994 around the kitchen table by Fabry patients. Fabry Australia’s Mission is ‘Uniting and Supporting the Australian Fabry Community’.

Photo of Fragile X Association of Australia

Fragile X Association of Australia

Fragile X Association of Australia is a member-based organisation which serves as the peak body for the Fragile X community across Australia.

Photo of Genetic Support Network Victoria (GSNV)

Genetic Support Network Victoria (GSNV)

We seek to assist people with genetic conditions and those who support them including support groups, health professionals, non-health professionals, families, and the broader community.

Photo of Heart Kids

Heart Kids

At HeartKids, we help navigate the lifetime journey of the 64,000 Australian children, teens, and adults affected by congenital heart disease. Our purpose is to help them and their families to lead the most fulfilling life possible and to reach their personal goals.

Photo of Osteogenesis Imperfecta Society of Australia

Osteogenesis Imperfecta Society of Australia

Providing information, support and connection.
The OI Society was formed in 1977 by parents and friends of those with OI in order to create a point of contact for newly diagnosed families. From simple beginnings, a nation-wide community has grown. A community where people can freely exchange experiences, friendship and knowledge of OI and how to navigate the world with OI.

Page 1 Page 2