From Jane Goodwin, PhD candidate. School of Psychology, University of Newcastle

In 2012/2013, we at the University of Newcastle Australia conducted a study of how parents disclose a genetic disorder to their children. Following on from that study, we would like to further understand how having a child with a neurogenetic condition has impacted parents’ and/or caregivers’ lives. This includes their emotional reaction, coping resources and psychological well-being.

We are currently running an online survey and are looking for parents of children with genetic conditions to complete it. These conditions include 22q11.2 deletion syndrome, Down syndrome, Tuberous Sclerosis, Prader-Willi syndrome, Williams syndrome, Fragile X syndrome, or a syndrome of unknown origin: that is, an as yet undiagnosed syndrome.

Are you a parent or caregiver to a child with Prader Willi Syndrome? Following on from an earlier study, the University of Newcastle would like to further understand how your child has impacted your life and how you have coped. You can do this study even if you participated in the Disclosure study in 2012/2013. To read more, or complete the survey click the link below:

For more information, please contact

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