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Genetic and Rare Disease Network

The Genetic and Rare Disease Network (GaRDN) is a not for profit organisation that acts as a peak body for genetic and rare disease support groups in Western Australia, working to empower individuals and their families to reach positive health outcomes. They inform health professionals and the wider community on the perspectives and experiences of those affected by genetic and rare diseases. GaRDN connect key stakeholders and service providers with people affected by genetic and rare diseases.

GaRDN works to ensure that people with genetic and rare diseases have timely access to relevant, up-to-date information about their condition and the healthcare and other services available to them in WA.

GaRDN represents the collective voices of people with genetic and rare diseases, their families and carers, to ensure that they are included in health policy and strategic decision making. They aim to make health professionals more aware of genetic and rare diseases.

GaRDN works to develop integrated, coordinated health care and support by stakeholders involved in the support and health care of people with genetic and rare diseases, their families and carers.

Recommended links

Last reviewed: March 2019

Information from this partner

Found 5 results

Information Packs for newly diagnosed individuals | Genetic and Rare Disease Network

Information Packs for newly diagnosed individuals The following online information packs provide individuals and their families with usable information on a variety of topics related to living with a genetic and/or rare condition

Read more on Genetic and Rare Disease Network website

Beckwith-Wiedemann Syndrome (BWS) | Genetic and Rare Disease Network

Beckwith-Wiedemann Syndrome (BWS) Information sheet aboutBeckwith-Wiedemann Syndrome (BWS) Other Names Wiedemann-Beckwith Syndrome (WBS); Exomphalos macroglossia gigantism syndrome; EMG Syndrome; Beckwish-Syndrome; BWS; Hypoglycemia with Macroglossia; Omphalocele-Visceromegaly-Macroglossia Syndrome; Visceromegaly-Umbilical Hernia-Macroglossia Syndrome

Read more on Genetic and Rare Disease Network website

Undiagnosed Disease Resources | Genetic and Rare Disease Network

Undiagnosed Disease Resources The term undiagnosed disease is used to describe people who are thought to have a genetic syndrome or condition that doctors have so farbeen unable to identify

Read more on Genetic and Rare Disease Network website

Conditions | Genetic and Rare Disease Network

Conditions Looking for information on a condition? Informationsheets GaRDN is developing information sheets on rare conditions and diseases

Read more on Genetic and Rare Disease Network website

Cri Du Chat syndrome | Genetic and Rare Disease Network

Cri Du Chat syndrome results from the loss or deletion of a significant portion of the genetic material from the short arm of one of the pair of number five chromosomes.

Read more on Genetic and Rare Disease Network website

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