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Rett syndrome is associated with severe functional impairments and many comorbidities, each in urgent need of treatments. Mutations in the MECP2 gene were identified as causing Rett syndrome in 1999. Over the past 20 years there has been an abundance of preclinical research with some studies leading to human clinical trials.
Guide our sibling research!
Guide our sibling research!
We want to hear from siblings living outside of Australian cities!
Sibling Support and Teen Talk Studies form
The visual representation of Teen Talk study findings
One of the many reasons for setting up the International CDKL5 Disorder Database was to learn more about this condition.
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.