Resources for families

Genetic Health Queensland

• Genetic Health Queensland: Prenatal Screening & Testing
• Genetic Health Queensland: Telehealth Frequently Asked Questions
• QLD Health Patient Travel Subsidy Scheme (PTSS)
• How to access genetic healthcare in Queensland (QLD Genomics video)

Clinical Genetics

• Human Genetics Society of Australasia (education & consumer resources)
• Australian Genomics: Genomic Information for you and your family
• Genetic and Rare Diseases Information Centre
• GeneReviews (guidelines & information about many genetic conditions)
• GenomeConnect (patient registry for individuals to connect and share data/information)

Cancer Genetics

• eviQ (factsheets & guidelines for people with an inherited cancer predisposition)
• Pink Hope (breast cancer)
• Wesley Hospital Choices Cancer Support Centre

Prenatal Genetics

• Prenatal Screening for Chromosomal & Genetic Conditions
• Mackenzie’s Mission

Genetic Testing

• Your Blood, Your Story (QIMR Aboriginal & Torres Strait Islander Health)
• QLD Genomics Patient toolkit (includes some additional language information)
• Melbourne Genomics: Learn Genomics
• Genetic testing and life insurance (NSW Centre for Genetics Education)
• QLD Health Genomic Testing Fact Sheet
• NSW Health Genomic Testing Fact Sheet
• NSW Health Genomic Testing Video
• ANU National Centre for Indigenous Genomics info and video

Education & Support

• NSW Centre for Genetics Education
• Genetics Service Finder (public & private)
• Unique (rare chromosome & gene disorders)
• ARCAN (rare chromosome disorders, now on Facebook)
• Guard Collaborative (national support)
• Rare Voices Australia (national support)
• Genetic Alliance Australia (national support)
• Syndromes Without a Name (national support)
• Eurordis (Europe)

Specific Conditions

• Australian Genetic Heart Disease Registry
• Australian Mitochondrial Disease Foundation
• Australian Pompe Association
• Cystic Fibrosis Australia
• Fabry Australia
• Fragile X Association of Australia
• Huntington’s Disease: Brain Foundation
• Huntington’s Disease: Enroll HD
• Leukodystrophy Australia
• MPS Australia (Mucopolysaccharide & Related Diseases Society)
• Muscular Dystrophy Australia
• Paediatric Epilepsy Network NSW
• PKU (phenylketonuria) Association of NSW
• Spinal Muscular Atrophy Australia
• Thalassaemia and Sickle Cell Australia (TASCA)