(RSAA) is a not-for-profit organisation which is managed by a Committee of parents to assist individuals with Rett syndrome. What RSAA does
Collect and share information
Assist, where possible, those involved in Australian studies
Organise gatherings of Rett syndrome families across Australia,
Facilitate conferences/workshops in Australia
Promote community awareness
Attend local and overseas con
ferences
Liaise with overseas Rett syndrome Associations
Support parents, siblings and carers
Newsletter
Collect and share information
Families and others are advised, either by social media or via our newsletter, of relevant information contained in journal articles or presented at conferences. Resources available from the Association include the DVD “Let’s Talk Rett Syndrome” containing content from a symposium held in Sydney in 2007, at which the special guest was Kathy Hunter, Founder and President of the International Rett Syndrome Association (IRSA) and author of ‘The Rett Syndrome Handbook’. Assist, where possible, those involved in Australian studies
The Australian Rett Syndrome Study (Perth) and the New South Wales Centre for Rett Syndrome Research (Sydney) were both recent recipients of financial assistance from RSAA. Organise gatherings of Rett syndrome families across Australia
Over the years, gatherings have been held in all mainland capital cities, on the Sunshine Coast (Queensland) and Central Coast (New South Wales), and at Echuca in north central Victoria. Facilitate conferences /workshops in Australia
Recent conferences in which RSAA played a role included the “Let’s Talk Rett Syndrome” symposium (Sydney, 2007) and the Rett Syndrome Family Conference (Brisbane, 2012). Promote community awareness
Various methods are used by RSAA to promote awareness of Rett syndrome ranging from electronic such as the internet; media in the form of newspapers, magazines or radio/television; print such as our brochure; or face to face by presenting talks on the syndrome. Attend local and overseas conferences
Recent conferences at which RSAA was represented have included the 2010 and 2014 Rett New Zealand Conference (Auckland); the Rett Syndrome Family Conference (Brisbane 2012); the World Congress on Rett Syndrome (New Orleans 2012); and the 3rd European Conference on Rett Syndrome (Maastricht, 2013). Summaries of the most recent New Zealand conference and that held in Maastricht, can be accessed via the ‘Latest News’ segment on our home page Accounts of the other conferences listed are available from RSAA. The next World Congress on Rett Syndrome will take place in Moscow on 13-17 May 2016. Liaise with overseas Rett syndrome Associations
Ongoing, with the most recent communications having been with Associations in France, Germany, New Zealand, Sweden, The Netherlands and Russia. Support parents, siblings and carers
RSAA supports families and others by direct communication with them, be it electronically, over the phone or in person; and by providing them with accurate and up to date information and opportunities to meet with one another.
