News
News
Stories, statements and updates from Rett Syndrome Europe and our member associations across Europe.
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Rett university in Krakow, Poland 18 November 2017
The Polish Rett syndrome association is proud to organize the next Rett University featuring Susan Norwell, expert on alternative communication, during the event called “All Engaged, All Communicate, All Learn!”. A one-day day lecture followed by 2 days of consultation are on the program. Everyone is welcome to Krakow from 18 to 20 November 2017.…
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AAC: Send stories and pictures now!
Important message from Gill Townend and Gerna Scholte (Researcher and Augmentative & Alternative Communication Expert, Rett Expertise Centre Netherlands). Dear friends, Individuals with Rett syndrome can communicate clever, funny and spot on messages. We are hoping you have many stories to share with us. Over the last 5 years the number of individuals with Rett syndrome that…
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Rett syndrome is in the ERN called ITHACA
European Reference Networks (ERN) have started this month! Check out this nice video on European Reference Networks for rare and complex diseases. As a reminder Rett syndrome is in the ERN called ITHACA, which stands for Intellectual disability, TeleHealth And Congenital Anomalies http://europa.eu/!Dc93bF
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Communication services and support for Rett syndrome – a family survey
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We have a new RSE flyer to download and print
Dear Friends, We are proud to present our new flyer. Use it at you convenience. There is a light version for internet sharing or a large (report) version for professional printing. Spread Awareness!
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Rett Education NL: Two-day training course report
By Caroline Lietaer. An inspiring two-day training course was organised by the NRSV – Rett Syndrome Association Netherlands on 11 -12 November in Houten. Participating speakers included Hector Minto from Microsoft/Tobii, UK, Susan Norwell from Rett University USA and Gill Townend from Rett Expertise Centre Netherlands-Maastricht. The training course provided an opportunity for parents, speech…
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Vienna RTT 50.1 – Full Report
By Danijela Szili. RTT 50.1 Vienna 15-17 September This was not my first Rett conference but was a very special one. It was not just about scientific sessions or sessions about clinical issues and communication but also about history of Rett syndrome. We witnessed many wonderful speeches from physicians, scientists and parents who were here…
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SAVE THE DATE: 2-4 Nov 2017 – 5th European Rett Syndrome Congress in Berlin
For more information please have a look at http://www.rett2017.berlin
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Rehabilitation camp for people with Rett Syndrome at Zabajka Hippotherapy and Rehabilitation Centre in Stawnica 2016
On 3-16 June 2016, Polish Rett Syndrome Association organised a rehabilitation camp for children with Rett Syndrome at Zabajka Hippotherapy and Rehabilitation Centre in Stawnica. As many as 21 girls participated in this event. The youngest participant was 2.5 years old, whereas the oldest one was 11. Similarly as two years before, some of the…
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European Conference on Rare Diseases and Orphan Products 26-28 May 2016 (Edinburgh)
By Danijela Szili. Around 750 participants from the countries all over the globe gathered in Edinburgh at the EICC (Edinburgh International Conference Centre) for the EURORDIS Membership Meeting (EMM) and 8th European Conference on Rare Diseases and Orphan Products with a slogan Game Changers in Rare Diseases. The 26th of May was reserved for the…
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