Latest News 

Today (22 March 2017), Neuren Pharmaceuticals announced to the Australian Stock Exchange in Melbourne that its Phase 2 trial of treatment of Rett syndrome girls aged from 5 to 15 years with trofinetide, showed that it was of benefit for them.  Neuren's actual announcement can be viewed by clicking on…

Susan Norwell M.A. Special Education, has spent the last 27 years in private practice working primarily with children on the autism spectrum and girls who have Rett syndrome. Her current focus is in teaching literacy skills for children with significant disabilities who are unable to speak, utilising augmentative communication and technology supports.   She is…

RSAA was represented at the May World Congress in Kazan, Russia, by its Vice-President Claude Buda and Committee member Tony Cagliuso. Both are fathers who have a daughter with Rett syndrome, Annelise Buda was 6 years old at that time while Raquelle Cagliuso was 23 years of age.                          The Committee's Sue Hallenstein went to…

Thank you to all those who stopped in Geelong on their Rett syndrome journey. Conference Details Dates: 19 (Thurs), 20 (Fri) and 21 (Sat) November 2015  Venue: Novotel Geelong, Victoria Theme: ‘The Rett Syndrome Journey: Pathways to Follow” Conference highlights:      At its peak, the most people in attendance…

A High Tea for Rett Syndrome was held at the Caversham Marquee, Perth, on 2 November 2014, to raise funds for Rett syndrome research conducted at the Telethon Kids Institute (Perth) and improve awareness of the disorder. Two hundred people, including at least 9 Rett girls, were present. Narelle Read,…

Recently, RSAA became aware of a number of Victorian parents who were being advised to stop restraining their Rett syndrome children and adults, as too were carers. As to why this sort of thing is still happening is hard to understand, as splinting, which is the most common  method used in Rett syndrome to manage hand behaviour, is an effective intervention for improving the quality…