Rett Syndrome Association of Australia | Events



Each of the following events is Rett syndrome-related i.e., it includes a focus on the syndrome, regardless of what the extent of that focus is.

Recent past:

19-21 November 2015             Geelong, Victoria                                      First RSAA National Conference                

Venue: Novotel Geelong             Conference theme: “The Rett Syndrome Journey: Pathways to Follow”

Additional information  about this event (including videos of most sessions) can be found on this website by clicking on the ‘About Rett syndrome’ tab above, then selecting ‘Selected resources specific to Rett syndrome’.


13-17 May 2016                        Kazan, Russia                                           8th World Congress on Rett Syndrome  

Further information about the Congress can be viewed by clicking on the following link         

Below left: 
World Congress - Kazan, Russia - May 2016
Olga Timutsa (President of the Russian Rett 
Syndrome Association (second from right) with, 
at far left, Nasim Bahran (Children's Hospital, 
Westmead, Sydney), Tony Cagliuso (RSAA), 
Helen Leonard (Australian Rett Syndrome Study) 
and Claude Buda (RSAA)

Australian representation at World Congress - Kazan, Russia - June 2016

 27 May 2016              Brisbane, Queensland                                              Susan Norwell (USA) presents “Learning and Communication Strategies in Rett Syndrome”

Venue: Brisbane International, Boondall.

An appreciation of what Susan is about can be gained by accessing  Susan Norwell Professional Development


15-17 September 2016       Vienna, Austria                                              RTT50.1               

CELEBRATING the 50th anniversary of the first publication on Rett syndrome by Dr Andreas Rett, the meeting in Vienna reviewed “Where are we right now?” in terms of research (past and present)  and overall knowledge of the disorder. 


15 October 2016           Perth, Western Australia                                     Rett syndrome gathering and dinner               

Gathering – ‘Mandoon Estate’, Swan River Valley, Perth.

Dinner – ‘Modo Mia Italian’ restaurant, The Burswood, Perth.


Saturday 18 March 2017          Semaphore, South Australia                   Rett syndrome gathering               

Venue: Semaphore Carousel, Adelaide.

Eleven Rett syndrome families represented at what was a very successful day. 


Sunday 19 March 2017          Deer Park, Victoria                                     Rett syndrome gathering               

Venue: Deer Park Club, Melbourne.

Pleasant afternoon enjoyed by members of 10 Rett syndrome families.


Sunday 2 July 2017              Healesville, Victoria                                     Big Screen Charity Gala               

Venue: Memo Hall, Healesville.

Approximately 200 people attended the screening of the acclaimed documentary “The Eagle Huntress“, an occasion organised by Shelley and Peter Morley in memory of their Rett syndrome daughter Ella and as a fundraiser for the Rett Syndrome Association of Australia. Ella, who passed away in 2008, would have been 21 in July of this year. A photo of her can be viewed by clicking on the following file     Ella 21 flyer a


Saturday 23 September 2017          Sunshine West, Victoria                  2016/17 RSAA annual general meeting

Venue: Global Food Equipment, 6 Grace Court, Sunshine West, Melbourne.

Guest speaker:   James Shaw (Vice-President, Clinical Operations, Neuren Pharmaceuticals)

            Topic:    Trofinetide: The Journey to Phase III.  


Sunday 8 October 2017          Kambah, ACT                                          Rett syndrome gathering   

Venue: Kambah Park, Canberra.
A very sociable number of hours were spent together by seven Rett families from Canberra, the surrounding area and Bombala (Vic). Great turnout!    


2-4 November 2017                Berlin, Germany                                       5th European Rett Syndrome Congress

Venue: Vienna House Andels, Landsberger Allee 106, Berlin.

RSAA was represented at the Congress by its Vice-President Claude Buda.  

Pictured below: Claude (at left), Paige 
Nues ( (USA) and Walter 
Kaufmann (Boston Children's Hospital)

A copy of the Congress programme can be viewed by clicking on         


Sunday 19 November 2017             Glen Waverley, Victoria                   Rett syndrome gathering

Venue: GlenAllen School, 7 Allen St, Glen Waverley.       


Sunday 19 November 2017           Penrith, New South Wales                Rett syndrome gathering
Venue: Tench Reserve, Tench Ave, Penrith.        


Sunday 3 December 2017              Semaphore, South Australia            Rett syndrome gathering

Venue: Semaphore Carousel, 81 The Esplanade, Semaphore.