News

Meet Sharon Terry, a former college chaplain and stay-at-home mom who took the medical research world by storm when her two young children were diagnosed with a rare disease known as pseudoxanthoma elasticum (PXE). In this knockout talk, Terry explains how she and her husband became citizen scientists, working midnight shifts at the lab to […]

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The consumer reference group is seeking members who have experience of developmental anomalies and their impact on individuals, families and the community. About the Western Australian Register of Developmental Anomalies The Western Australian Register of Developmental Anomalies (WARDA) records and monitors developmental anomalies in Western Australia using two registries – the Western Australian Birth Defects […]

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Do you have 2 or more chronic health conditions, and live in Bunbury or surrounds? Have you visited a General Practice clinic to discuss your chronic health conditions within the past 12 months? Are you interested in helping us to understand what it is like to have a chronic condition managed by a GP, and […]

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GaRDN is disseminating this on behalf of the researchers and more information about the project is below. http://www.surveygizmo.com/s3/3632348/families-living-with-rare-diseases   Dear Families living with a rare disease Prof Nigel LAING AO, UWA is conducting a research project exploring the potential for implementation of a carrier screening program for severe/lethal recessive diseases. Part of the project is […]

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Prader-Willi Syndrome Australia would like to announce the recent addition of two valuable new resources to their national website www.pws.org.au PRADER-WILLI SYNDROME MEDICAL ALERTS KIT Australian Edition The kit contains an updated Medical Alert Booklet, wallet card and Hospital Introductory Notes. The booklet for medical professionals who are caring for people with PWS also includes […]

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My Epilepsy key looks like a normal USB, but when it is plugged into a computer the key contains access to information, education, resources and programs that will assist those with epilepsy help self-manage their condition. Read more on the Community News website article

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If you are looking for disability advocacy support try the NDIS search tool. It is a tool that can help you find an advocate, who is a person who is there to help. They can provide support, encourage you to make informed decisions and help people with a disability to learn about their human rights […]

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Healthy Australians will now be able to have their whole genome sequenced to reveal their risks of cancers and genetic conditions. The cost to patients will be more than $6000 with no Medicare rebate available. Read more on the ABC News article.

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@GaRDN_WA GaRDN promotes awareness and understanding of genetic and rare diseases and connects, informs, supports and empowers those affected by genetic and rare diseases.

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