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Home » Individuals and Families » Talking to children about genetic conditions

Talking to children about genetic conditions

This section contains resources that parents can use to help explain genetics and genetic conditions to their children in an age appropriate manner.

General resources

22q11.2 syndromes

  • Just Jen: Living With Invisible DifferencesIn this funny, heartwarming celebration of kindness and inclusion, spunky grade school narrator Jenna, or Jen (as she prefers), shares all about living with invisible differences.


Cystic Fibrosis (CF)

Down syndrome 


Fragile X

Huntington's disease (HD)

Mitochondrial disease (MiTO)

  • 'A Little book About Mito' - by Dean Crawley & Martine Vandrespuy
    General information about what MiTO is and explains to young children (<10 years old), what to expect from one with the disease. 
  • Mitochondrial disease - Australian Mitochondrial Disease Foundation. Thorough information about MiTO for teenagers (15+ years old). Describes what it is, what symptoms, what to expect etc. 
  • Parent teacher resources - a range of links for parents to distribute to those around them, such as other parents, teachers and educators about their child's condition. 
  • Mito action - aimed at teenagers who have either grown up with the disease or has be diagnosed during different stages of their childhood. Includes interviews from diagnosed teenagers. 
  • 'Children's G-tube book' aimed for kids who suffer from MiTO and require a G-tube. Describes the process of getting diagnosed, and being treated. 
  • Australian Mitochondrial Disease Foundation

Prader Willi syndrome (PWS)


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