Rett Syndrome Association of Australia | News



Neuren’s Phase 2 trial of trofinetide demonstrates significant clinical benefit in paediatric Rett syndrome. Phase 3 trail gets the go ahead from the Food and Drug Administration (USA)

Posted by Bill Callaghan in 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…

May 2016, Brisbane – Presentations and workshops given by Susan Norwell (USA), a specialist on communication in Rett syndrome

Posted by Bill Callaghan in News

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…

Overseas conference representation during 2016 and 2017 – Members of the RSAA Committee attended Rett syndrome conferences in Russia, New Zealand, Austria and Germany

Posted by Bill Callaghan in News

RSAA was represented at the May 2016 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.                         …

Restraint is a positive intervention in the management of Rett syndrome

Posted by Bill Callaghan in News

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…