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 choosing ‘Selected resources specific to Rett syndrome’.


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

RSAA was represented by its Vice-President Claude Buda and Committee member Tony Cagliuso. Further information about the Congress can be obtained 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                 “Learning and Communication Strategies in Rett Syndrome”  Susan Norwell (USA) 

Venue: Brisbane International, Boondall.

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

Information on how to obtain DVDs of Susan’s presentations is available on this website by clicking on the ‘About Rett syndrome’ tab above, then choosing ‘Selected resources specific to Rett syndrome’.


15-17 September 2016       Vienna, Austria                    RTT50.1               

Venue: Juridicum, Vienna.

Celebrating the 50th anniversary of the first publication on Rett syndrome by Dr Andreas Rett, the meeting in Vienna reviewed research (both past and present) and existing knowledge of the disorder.  RSAA was represented by its President Bill Callaghan, Vice-President Claude Buda and Committee member Sue Hallenstein.


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 2017.


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

Venue: Global Food Equipment, Sunshine West, Melbourne.
Guest speaker: James Shaw (Vice-President, Clinical Operations, Neuren Pharmaceuticals)
Topic: Trofinetide: The Journey to Phase III.


8 October 2017          Kambah, Australian Capital Territory     Rett syndrome gathering   

Venue: Kambah Park, Canberra.

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

Venue: Vienna House Andels, 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         


19 November 2017             Glen Waverley, Victoria                   Rett syndrome gathering

Venue: GlenAllen School, Glen Waverley, Melbourne.       


19 November 2017            Penrith, New South Wales              Rett syndrome gathering

Venue: Tench Reserve, Penrith.        


3 December 2017              Semaphore, South Australia            Rett syndrome gathering

Venue: Semaphore Carousel, Semaphore, Adelaide.   


6 May 2018                        Glen Waverley, Victoria                   Rett syndrome gathering
Venue: Glenallen School, Glen Waverley, Melbourne.


20 May 2018                      Wellington Point, Queensland        Rett syndrome gathering
Venue: Redlands Sports Club, Wellington Point, Brisbane.


27-29 September 2018            Rome, Italy                               ‘Rett Syndrome Research, Towards the Future’
Venue: H10 Hotel, Via Amedeo Avogadro 35, Rome.

RSAA was represented at this meeting by its Treasurer, Tony Cagliuso.


Sunday 14 October 2018         Carina, Brisbane                        Book launch of Samantha Wheeler’s novel ‘Everything I’ve Never Said’
Venue: Carina Leagues Club, 1390 Creek Rd, Carina.   

‘Everything I’ve Never Said’ is the 6th novel by children’s author Samantha Wheeler. Her youngest daughter, Charlotte, who turned 21 in 2018, has Rett syndrome and is the inspiration for this novel. The story concerns Ava who has the syndrome and who seeks to be heard.


Saturday 17 November 2018        Sunshine West, Victoria        2017/18 RSAA annual general meeting
Venue: Global Food Equipment, Sunshine West, Melbourne.
Guest speaker: Professor Eric Gowans, Senior Research Fellow, Discipline of Surgery, University of Adelaide
Topic:  Feedback on the ‘Rett syndrome research, towards the future’ conference which he attended in Rome on 27-29 September 2018.


Sunday 2 December 2018        Grovedale, Geelong                 Rett syndrome gathering
Venue: Grovedale Neighbourhood House, 45 Heyers Rd, Grovedale.


Friday 1 March 2019               Healesville, Victoria                  Rett Syndrome Awareness Cup
Venue: Don Rd Sporting Complex, Healesville. Gates open: 5.30pm, entry $5 per person.

Netball starts at 6.30pm, Aussie rules Rett Syndrome Awareness Cup starts at 8pm

There will activities for the children, a raffle, BBQ, bar and a jumper auction after the game.