Resources

Family Units

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

Respectful Relationships

Resources on PKU

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

https://mdda.org.au Patent 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

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?

Case Study 1: Cystic fibrosis

• cystic fibrosis together

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

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