Fact Sheets (Produced by RSAA)

Fact Sheet 1 – RSAA, who are we and what do we do?

Fact Sheet 2 – What is Rett Syndrome?

Fact Sheet 3 – Diagnosis “Typical” Rett Syndrome

Fact Sheet 4 – Diagnosis “Atypical” Rett Syndrome

Fact Sheet 5 – Living with Rett Syndrome

Fact Sheet 6 – The Faces of Rett Syndrome

Respite Plus Forum 2016 – Susan Norwell

Susan Norwell (USA), a specialist on communication and Rett Syndrome, conducted two all day forums in Brisbane in May 2016. One was for families and the other, for professionals.

Copies of these presentations can be obtained directly from Equity Works via the following link: http:/www.equityworks.org/news-and-events/latest-news/item/134-respite-plus-forum-2016

“Our Lives with Rett Syndrome” – Video (Presented by Dr Helen Leonard)

A 35 minute video which was produced in 2014, begins with Dr Helen Leonard, Principal Researcher for the Australian Rett Syndrome Study, briefly describing the current work of her team. The remaining 30 minutes of this presentation sees parents and siblings talking openly about their lives with Rett syndrome.

The video is a professional production, its content both relevant and informative, and is a valuable resource on the syndrome, particularly for a family whose young child receives a diagnosis.

Please click on  “Our Lives with Rett Syndrome” Video  to view the video

World Congress on Rett Syndrome – June 2012 – New Orleans, USA

In June 2012, the 7th World Congress on Rett Syndrome was held in New Orleans. Organised by the International Rett Syndrome Foundation, topics referred to in a report prepared by RSAA’s representative at the Congress, include eye gaze technology, communication, therapies, health issues, education and research.

Please click on  7th-World-Congress-on-Rett-Syndrome to view the report.

European Conference on Rett Syndrome – October 2013 – Maastricht, the Netherlands

In October 2013, the 3rd European Conference on Rett Syndrome took place in Maastricht, the theme of which was “Research Update and Preventive Management”. It was the first occasion that the RSAA had been represented at a conference organised for the European Rett syndrome community. Topics referred to in a report prepared by RSAA’s representative in Maastricht include communication, research, ageing, therapies, curvature of the spine and dental care.

Please click on European Rett Syndrome Conference – Oct 2013 to view the report.

Rett Syndrome New Zealand’s bi-annual conference, Auckland 16-18 May 2014 – A summary

Topics include communication, education, orthopaedics and research. The report has been prepared by Phil Creswell who represented RSAA at the conference.

Please click on 2014 RettNZ Conference Report to view the report.

RETT Syndrome Association of Australia