Resource Guide for Families
Knowing where to access information, services or support can play a vital role in optimising day-to-day quality of life. The Resource Guide for Families outlines services that may be of assistance and how you may access them. This guide has been developed to help families who have had difficulty locating services and resources when the need arises.
Download: Resource guide for families (PDF)
Directory of Genetic Support Groups and Community Support Organisations in Western Australia
The purpose of the Directory is to provide genetic support information to health professionals, individuals and Genetic Support Groups. The aim of the Directory is to assist with referral for individuals and families with either a known or newly diagnosed genetic condition or predisposition to these Genetic Support Groups.
- Download: Directory of Genetic & Rare Disease Support Groups and Community Support Organisations in Western Australia
- frequently updated, if you find any out of date information please contact us on 9485 8999 or email: firstname.lastname@example.org
- Health Consumers’ Council WA - Download: Treatment of rare medical conditions (PDF)
- Fact Sheet - Download: About Rare Diseases in Australia (PDF)
Starting a Support Group
Download: Resources for support groups (PDF)
Latest Gene Advocate Newsletter
- About Rare Diseases - Rare Disease Day
- Major leap for Australian genetic medicine
- Helping families affected by rare diseases
- RARE Facts and Statistics
Familial Hypercholesterolaemia Family Support Group WA
Download: Gene Advocate Newsletter Issue 76 2014
Gene Advocate Newsletters 2013
Download: Gene Advocate Newsletter Issue 75 2013 Genetic testing for breast cancer, Efforts to uncover Mitochondria's secrets, The Disability Wars: Australia's Unwritten History, Livewire- online community for children with a rare disease
Member Profile: Fabry Supprot Group of Australia
Download: Gene Advocate Issue 74 2013 - Beyond Genetics: Epigenetics & the Future, Researchers move a step closer to curing MS, why are some drugs publicly subsidised and others are not?
Download: Gene Advocate Issue 73 2013 - Should you have your whole genome sequenced?, Neurofibromatosis-NF1 Patient Registry Initiative, Discovery of Gene Mutation that Causes Sturge-Weber Syndrome and Port-Wine Birthmarks
Download: Gene Advocate Issue 72 April 2013 - Blood test indicator for Down Syndrome, Could my genetic information affect my health or life insurance?, Australian process for subsidised access to orphan drugs, New Genetic Tool May Help Diagnose And Treat Kids with ADHD, Programmes to support chronic disease self-management, Epilepsy Association of WA.
Download: Gene Advocate Issue 71 Jan 2013 - Rare Disease Day, Privately owned genetic databases may hinder diagnosis, Musculoskeletal machinations in WA, International team discover clue to Friedreich's Ataxia, Dyslexia SPELD Foundation WA Inc.
Gene Advocate Newsletters 2012
Download: October Issue 70 (PDF) - Helping Our Kids Communicate Their Health Care Needs, Disability Rights Now - Civil Society Report on Australia, Call for Indigenous Gene Research Protocols, Down Syndrome WA.
Download: April Issue 69 (PDF) - Born Healthy Network (An international community), Improving Doctor/Caregiver Communication, Epilepsy research, Cystic Fibrosis.
Download: February Issue 68 (PDF) - Rare Diseases, Potential for earlier diagnosis of ovarian cancer, Hereditary Angioedema (HAE), Cornelia de Lange Syndrome.
Gene Advocate Newsletters 2011
- Download: December Issue 67 (PDF) - What is a clinical trial?, Coeliac WA, Groundbreaking Cystic Fibrosis study, Direct-to-consumer genetic testing in children.
- Download: October Issue 66 (PDF) - What is personally controlled electronic health record (PCEHR)? Cleft Palate and Lip Society.
- Download: July Issue 65 (PDF) - Personalised medicine and genetics, Chromosome 18 Registry & Research Society Australia.
- Download: April Issue 64 (PDF) - WA Register of Developmental Anomalies, Questions Raised by the "New Genetics", Chiari & Syringomyelia Australia.
- Download: January Issue 63 (PDF) - What is a rare disease? Common problem of rare disease in general practice, Mandatory reporting of birth defects WA, CHARGE Syndrome Association.