News

The Centre for Genetics Education has just updated its fact sheet on Life insurance products and genetic testing in Australia. http://www.genetics.edu.au/publications-and-resources/facts-sheets/fact-sheet-20-life-insurance-products-and-genetic-testing-in-australia A couple of key points to note: 1. When applying for life insurance, you may be asked about: Any health conditions that have been diagnosed in your first degree relatives only and the age […]

Read More

Genomic medicine is increasingly employed in clinical care of individuals with common and rare disease, although its implementation is still slow relative to the promise this technology holds. One of the major barriers to use of genomic medicine is limited provider awareness and knowledge, based on the rapid pace of development in this field but […]

Read More

Researchers at The Royal Children’s Hospital are looking for children and adolescents aged 6-18 years who have been diagnosed with FSHD, to participate in one or both of these studies: 1. The effect of the nutritional supplement (creatine monohydrate) on strength and muscle mass in children with FSHD 2. Investigating the use of both patient […]

Read More

Pallister-Killian Syndrome is a rare condition affecting individuals in various ways. Although the condition cannot be cured, advances in the detection and the treatment of its various conditions is progressing. The Pallister-Killian Syndrome Foundation of Australia is committed to support work towards a better understanding of the condition. This award is an annual award which […]

Read More

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 […]

Read More

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 […]

Read More

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 […]

Read More

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.

Read More

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 […]

Read More

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

Read More