Every individual contribution adds to our collective understanding of Rett Syndrome.

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The Australian Rett syndrome study


Rett syndrome is a rare neurological disorder mainly affecting females. We manage two databases that collect information from families and clinicians to better understand the course of Rett syndrome and effectiveness of treatments.


AussieRett was established in 1993 and aims to collect information about all children and adults in Australia with Rett syndrome born since 1976.  View a brochure about AussieRett.


Read about an Australian campaign to raise awareness and vital funds for MECP2 duplication syndrome research.


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Our Lives With Rett Syndrome from Steve Wise | 27Creative on Vimeo.



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The International Rett syndrome study




InterRett was established in 2002 and collects information about children and adults with Rett syndrome of any age from around the world. 


This study is funded by the International Rett Syndrome Foundation (IRSF). Download our Celebrating 10 years flyer which gives an overview of our achievments since the project began.


If you are not already a participant we invite you to Join InterRettIf you have a login, click here to complete the InterRett Family Questionnaire.


Registration and questionnaire are also available in the following languages:

Dutch Deutsch Mandarin Polish Espaňol Français Portuguese


To generate graphs from our InterRett data search our database!


View a brochure about InterRett.