What RSAA does
Enrich the quality of life of families living with Rett syndrome.
Support to parents, siblings and carers;
- Promote community awareness
- 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
- Attend local and overseas conferences
- Liaise with overseas Rett syndrome Associations
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. October is Rett syndrome awareness month.
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’. In addition, videos of most sessions conducted at the ‘Rett Syndrome Journey: Pathways to Follow’ conference which was held at Geelong, in late November 2015, can be viewed on this website via the following link
Assist, where possible, those involved in Australian studies
Organise gatherings of Rett syndrome families across Australia
Facilitate conferences /workshops in Australia
Recent conferences in which RSAA played a role included the “Let’s Talk Rett Syndrome” symposium (Sydney, 2007), the Rett Syndrome Family conference (Brisbane, 2012) and the ‘Rett Syndrome Journey: Pathways to Follow’ national conference (Geelong, 2015).
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); the 3rd European conference on Rett Syndrome (Maastricht, 2013), ‘Rett Syndrome Journey: Pathways to Follow’ national conference (Geelong, 2015), and during 2016, the World Congress on Rett Syndrome (Kazan), Learning and Communication Strategies for Rett syndrome (Brisbane) and the Rett50.1 conference (Vienna). 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.
Liaise with overseas Rett syndrome Associations
Ongoing, with the most recent communications having been with Associations in Austria, France, Germany, New Zealand, The Netherlands, The Philippines, the United Kingdom, Russia, Sweden, and the United States.
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.
Newsletters have been produced by the Association since December 1989, the most recent of which is the January 2013 edition.