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30 Aug 2024... The Centre for Population Genomics  has developed new participant information and educational resources, tailored specifically for engaging diverse communities in genomic research. These materials aim to break down cultural and language barriers so that many community members can boost participation.   Built with guidance from multicultural advisors and in collaboration with community members and expert translators, these resources are now freely available under a Creative Commons license. These will be available through an interactive text compilation tool in the next few months.

01 Aug 2019... You have been given this factsheet because your baby has been born with genitals that look a bit different (atypical). These genital differences are sometimes referred to as 'intersex variations', 'differences of sex development' or 'variations in sex characteristics'. This fact sheet provides information for families to fully understand the issues and risks associated with your child's specific intersex variation in order to make informed decisions about their best care and treatment.

01 Nov 2023... Around 1 in 20 people worldwide are thought to have inherited an altered globin gene, which they could pass on to their children. This may potentially result in a genetic blood disorder, affecting haemoglobin production. Haemoglobin is a protein in the blood that carries oxygen around our bodies. These inherited blood disorders are passed from parent to child in genes. If you are a carrier of an altered globin gene, your partner must have a blood test to determine his or her carrier status.

01 Aug 2019... You have been given this fact sheet because your baby or child has been diagnosed as having a variation in sex characteristics. This means your child was born with naturally occurring characteristics that do not fit the typical definitions for male or female bodies. These differences are also sometimes referred to as 'intersex variations', 'differences of sex development' or 'conditions associated with reproductive development'. Different people prefer different terms.

01 Nov 2023... Thalassaemia is a group of blood disorders affecting haemoglobin production. Haemoglobin is a protein in the blood that carries oxygen around our bodies. Thalassaemia is passed from parent to child in genes.

01 Nov 2023... Thalassaemia is a group of blood disorders affecting haemoglobin production. Haemoglobin is the protein in red blood cells that carries oxygen to cells throughout the body. Thalassaemia is passed from parent to child in genes. 

07 Jun 2021... Suitable for 0-8 years. In this short video, parents of children with Fragile X syndrome discuss different therapies for children. Parents and child health specialists talk about why it's important to get early intervention as soon as possible after diagnosis. Health specialists say that children with Fragile X develop different skills at different rates. A team of therapists working together is the best way to help them.

06 Jul 2021... Suitable for 0-8 years. In this short video, parents of children with Fragile X syndrome talk about this genetic condition. They talk about spotting the early signs, getting a diagnosis and their reaction to the diagnosis. Child health specialists explain how this condition happens. They also go through the physical, developmental, behavioural and emotional features of the syndrome.

01 Sep 2016... Genetic Alliance (GA) brochure describing what is a genetic condition and detailing the services we provide. Our aim is to facilitate support for those affected directly or indirectly by genetic conditions throughout Australasia. GA provide peer support to families and individuals affected by a genetic condition.

01 Jun 2024... The Centre for Population Genomics has developed new participant information and educational resources, tailored specifically for engaging diverse communities in genomic research. These audio materials aim to break down cultural and language barriers so that many community members can boost participation. Built with guidance from multicultural advisors and in collaboration with community members and expert translators, these resources are now freely available under a Creative Commons license. These will be available through an interactive text compilation tool in the next few months.

14 Nov 2022... This resource answers some commonly asked questions about rare and genetic diseases. What are rare diseases? Living with rare diseases Ways that you can support people with rare diseases How can I tell if I'm a carrier of a rare disease?