{"id":1113,"date":"2015-02-09T14:21:13","date_gmt":"2015-02-09T03:21:13","guid":{"rendered":"http:\/\/localhost\/rettaustralia\/?page_id=1113"},"modified":"2022-07-01T16:06:01","modified_gmt":"2022-07-01T06:06:01","slug":"selected-resources-specific-to-rett-syndrome","status":"publish","type":"page","link":"https:\/\/rettaustralia.org.au\/about-rett-syndrome\/selected-resources-specific-to-rett-syndrome\/","title":{"rendered":"Useful Resources"},"content":{"rendered":"
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.<\/p>\n
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<\/a><\/p>\n 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.<\/p>\n 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.<\/p>\n Please click on “Our Lives with Rett Syndrome” Video <\/a>to view the video<\/p>\n 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<\/strong>.<\/p>\n Please click on 7th-World-Congress-on-Rett-Syndrome<\/a> to view the report.<\/p>\n 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<\/strong>.<\/p>\n“Our Lives with Rett Syndrome” – Video (Presented by Dr Helen Leonard)<\/h5>\n
World Congress on Rett Syndrome – June 2012 – New Orleans, USA<\/h5>\n
European Conference on Rett Syndrome – October 2013 – Maastricht, the Netherlands
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