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The diagnostic odyssey to Rett syndrome: The experience of an Australian family
The diagnosis of a rare disorder is dependent on the clinician's particular knowledge and experience, and can be challenging when the presentation is variable.
Research Advisor Application
Guide our sibling research!
Be a Research Advisor!
Guide our sibling research!
Rural Cancer Siblings
We want to hear from siblings living outside of Australian cities!
Sibling Support and Teen Talk Studies
Sibling Support and Teen Talk Studies form
Infographics
The visual representation of Teen Talk study findings
The CDKL5 Disorder
One of the many reasons for setting up the International CDKL5 Disorder Database was to learn more about this condition.
Research snapshots
Our research covers a broad range of areas from the influence of mutation type on health outcomes to factors impacting on the lives of familes.