Support Needs of Fathers of children with Fragile X syndrome – Australian study

May 5th, 2017


If you are a father of a child or adult with Fragile X syndrome, we invite you to tell us about your experiences by participating in the project: 
‘The support needs of fathers of children with Fragile X syndrome”

The NSW Genetics of Learning Disability (GOLD) service and University of Sydney Master of Genetic Counselling program invites all fathers who are:
•   Over 18 years of age
•  Have at least one child (young or adult) with a Fragile X syndrome diagnosis
•  If the first diagnosis of FXS was made over 12 months ago
• You do not yourself have a Fragile X genetic result in the premutation or full mutation range

to participate in a telephone interview to explore your experiences surrounding your child/children being diagnosed with Fragile X syndrome and since the diagnosis.

If you decide to participate in the study, please read the participant information statement and sign and return the consent form (see pdf document below) or contact Rosie O’Shea who will send a recruitment pack.

Contact Rosie O’Shea via email at or 02 99264684, if you have any questions or would like a paper copy of the participant information statement and consent form sent to you.

FXAA FXS father study PIS+PCF 020517


You can help us make a difference

Fragile X Association of Australia is a registered charity, funded by donations and fundraising. Donations of $2.00 and over are tax deductible. Your donation will help us support families affected by Fragile X, and to increase awareness of Fragile X associated conditions.

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