• Incidence of classic forms: 1:12000 - 1: 15000

  • Incidence of atypical forms: 1: 45000

  • In Australia, Rett Syndrome affects about 1 in 15,000 girls aged 5 to 18 years. Approx 12 girls per year, are diagnosed by the age of 12 years and10% of those with RS reside in South Australia. By 2002, there were about 250 girls throughout Australia who had been diagnosed with this condition.

  • RS is most often misdiagnosed as autism, cerebral palsy or non-specific developmental delay.

  • RS occurs in all races and ethnic groups.

  • About 70% survive to age 35 years. The majority of deaths in RS are either sudden and unexpected, or secondary to pneumonia.