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.
We have another page if you are looking for mental health and wellbeing related supports, such as counselling, support for decision making or peer support.
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.Read More
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.
Our Vision
That society recognise, as individuals, all people with Prader-Willi Syndrome and acknowledge and supports their right to participate in all facets of community life.
Information from: https://pws.org.au/
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.Read More
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.
Sotos Syndrome Australasia
The Sotos Syndrome Australasia (Inc.) is a non-profit organisation that provides advocacy for Sotos Syndrome in Australasia.Read More
The Sotos Syndrome Australasia (Inc.) is a non-profit organisation that provides advocacy for Sotos Syndrome in Australasia. The Association aims to connect and provide support for families, carers and individuals affected by Sotos Syndrome, while endeavouring to increase awareness, understanding and acceptance of Sotos Syndrome within the medical community, education sector and general community.
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.Read More
Receiving the diagnosis of Spinal Muscular Atrophy is one of the most devastating moments a parent and family can experience. However, over time you will learn to establish a new sense of normal; you will adapt finding new ways of doing things. You may find you have many questions regarding SMA care options and how to manage e person’s at times, complex care.
You are not alone,
we are here to support you.
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.Read More
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.
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.Read More
Vision
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.
Mission
Our mission is to encourage the search for treatments and preventions of Trisomy 18, to educate and support medical professionals, and to create a caring community that embraces ALL families impacted by the Trisomy 18 diagnosis of a much-wanted child.
Before our founding in 2003, learning about Trisomy 18 syndrome was difficult for parents and the public—especially in the context of prenatal diagnoses for expectant parents. Working together with our community members, the Foundation’s efforts have led to many advances in how Trisomy 18 is understood and how health professionals respond to newly-diagnosed parents in the United States, but there is so much that still needs changing. And the need for investments in genetic research to identify pathways to treatments has never been greater.
We tirelessly advocate for research innovations and new approaches to the search for treatments and preventions that can save lives and dramatically reduce the incidence rate of Trisomy 18 conceptions and increase survival rates. We provide a supportive community for everyone impacted by Trisomy 18 syndrome and related disorders. We always have the latest and most accurate information, and we educate everyone—from patients and families to medical professionals and the general public—about Trisomy 18 syndrome and related disorders.
— From the Trisomy 18 Foundation website.
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.Read More
The Van Wright Foundation is a non-for-profit charity established in March 2012, by Collene and Phil Wright, the parents of Van Wright. In November 2011 at 15 months of age, Van was diagnosed with MECP2 duplication syndrome. There was so little information about this disorder at the time that even the medical team who gave the diagnosis had not heard of it. Getting a diagnosis was a struggle. From that point Collene and Phil vowed to raise awareness of MECP2 duplication syndrome and fund research so that a cure may be found.
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.
We have connected with the medical community in Australia to ask for their assistance in raising awareness; Dr Carolyn Ellaway, Prof John Christodoulou, Dr Helen Leonard and Dr David Amor. Further afield in the USA, we have reached out to Dr Melissa Ramocki and Dr Huda Zoghbi.
We have established a relationship with Monica Coenraads, Executive Director of Rett Syndrome Research Trust in the USA http://www.rsrt.org, who is the primary beneficiary for our fundraising efforts. MECP2 duplication syndrome families the world over are fortunate to have the resource that is RSRT.