Resources

Inheritance

https://www.yourgenome.org/theme/what-is-inheritance Your Genome Website credited to Wellcome Sanger Institute UK

Rare Conditions

https://rarediseasebookforkids.com/ A book for children living with a rare condition

https://lnkd.in/gfRxKu4f The Weight of Rare Disease: The Rare Care Centre in Perth, Western Australia has launched a new rare disease animation and supplementary e-learning resource aimed at helping school teachers better support children living with a rare disease. roject was inspired by a heartfelt letter from a young student living with a rare disease, who shared that their teachers lacked awareness of the impact their condition had on their day-to-day schooling

Family Units

A Family is a Family is a Family– Digital or print book on family units

Respectful Relationships— Lesson plans to support the topics of emotional literacy, personal strengths, positive coping, positive gender relations, and more distributed through State of Victoria (Department of Education and Training)

Resources on genes and health variation

https://www.youtube.com/playlist?list=PLXwHgASiClJnUl3Bem-r18YKYokXzXIUm

https://youtu.be/AAeMGtuhg6o?si=YUrQGW8KzDeiiESA

Resources on PKU

https://www.healthdirect.gov.au/phenylketonuria Fact Sheet on PKU

https://mdda.org.au Patient support group resources

https://www.hgsa.org.au/common/Uploaded%20files/pdfs/asiem%20dietary%20handbooks/PKU.pdf PKU Handbook from Australasian Society for Inborn Errors of Metabolism (ASIEM)

Resources on Cystic Fibrosis

https://cfsmart.org.au/cf-education-at-your-school/

https://www.cftogether.org.au

https://www.genetics.edu.au/PDF/Cystic_fibrosis_fact_sheet-CGE.pdf CF Fact Sheet from NSW Health

Resources on sickle cell anaemia

https://aussicklecelladvocacy.org

https://www.healthdirect.gov.au/sickle-cell-anaemia

Resources on SMA

• Mechanisms of SMA- Biogen
• Stevens Story living with SMA video

Prenatal and postnatal testing

• Prenatal genetic testing Source Victorian Clinical Genetic Services
• What is a Genetic Test? Source Melbourne Genomics Alliance
• Sequencing Guide Source Undiagnosed Diseases Network (Harvard)

SMA Australia and patient peer support

• SMA Australia Information Guide
• Patient Advocacy Group Resource SMA treatments resource

Ethical, legal and social implications of genomic testing (ELSI)

• Australians’ views and experience of personal genomic testing: survey findings from the Genioz study
• The Genioz Study – Melbourne Medical School :Personal genomic testing, what is it and what does it mean for Australians?
• Department of Health NSW Fact Sheet on genetic Testing

DNA and general foundational biology for human genetics

DNA Fact Sheet – National Institute Human Genome Research

Genetics Vs. Genomics Fact Sheet National Institute Human Genome Research

DNA, genes and the genome Melbourne Genomics Health Alliance E-learning guide for patients and interested readers

Case Study 1: Cystic fibrosis

• cystic fibrosis together– Australian peak body for Cystic fibrosis peer support
• National Human Genome Research Institute https://www.genome.gov/Genetic-Disorders/Cystic-Fibrosis

Case Study 2: Epilepsy

• Epilepsy Foundation Australia
• Seizure first aid animation for children
• Understanding epilepsy syndromes- Epilepsy Foundation

• Babyscreen+ pilot study protocol
• Screening rare diseases at birth a European survey by Eurordis

• Whole Genome Sequencing Source Hospital for Sick Children Canada (SickKids )
• Step by Step explain what genomic test Source Melbourne Genomics
• Human Genome Project Fact Sheet

• Understanding genomics (100,000 Genomes Project)
• Melbourne Genomics Dive Deeper into genomics