News

Congratulations to the award winners at our inaugural Rare Disease Day Awards Evening: Sue Scott (Advocacy and Patient Support award), Professor John De Roach (Researcher award), and Professor Merrilee Needham (Clinical Professional award).   Patient Advocacy and Support Award: Sue Scott Sue Scott was awarded the inaugural Rare Voices Australia (RVA) GaRDN Rare Disease Day […]

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A new position statement from Cancer Australia recommends that all women diagnosed with invasive epithelial ovarian cancer be offered assessment of their genetic risk, regardless of their age or family history. Around 1,600 women are diagnosed with ovarian cancer in Australia each year. Gene faults are common in women with ovarian cancer and are found […]

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Primary Carers’ Perspectives on Respite Care for Children with Rare and Genetic Diseases What is the Project About? Primary carers provide most of the informal assistance to children with rare and genetic diseases. As a result, primary carers experience high levels of stress and isolation from their communities. Respite care provides short breaks to primary […]

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With NDIS rolling out across WA, GaRDN has put together a quick overview of information to help you understand the scheme and how to access it.

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The Genetic and Rare Disease Network is pleased to be an Associate of the Western Australian Health Translation Network (WAHTN) The WAHTN represents a new, collaborative way for universities, hospitals, medical research institutes and health affiliated organisations to work together in Western Australia and to interface with the community. We look forward to working with WAHTN […]

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Have a read of the latest news and information from the team at GaRDN

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Have a read of the latest news and information from the team at GaRDN

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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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