The Fragile X Association of Australia conducted the first national survey of fragile X families in Australia and New Zealand in 2009.  The study is an extension of a survey undertaken in the United States in 2008 by Dr Don Bailey from Research Triangle Institute (RTI).

In the attached newsletter we present a preliminary overview of the demographics of the sample and an overview of attitudes towards testing for FXADs. Two more overviews will be provided in subsequent newsletters: one on education and employment and the other on availability and quality of services. More detailed analysis will be placed on the website in due course.

The Australia and New Zealand Fragile X Family Survey – Preliminary Overview (PDF File)