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EURORDIS Winter School 2019

EURORDIS Winter School 2019

The second edition of EURORDIS Winter School was an event I have longed for months. The training was about scientific innovations and translational research and was held in the prestigious Imagine Institute in Paris. I was very happy and honoured to be one of the 30 selected applicants from the 137 that applied. I am […]

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Austrian Family Day 2017

Family Day of the Austrian Rett-Syndrome Association

By Stella Peckary. Sept. 23rd, 2017 A small group of Rett-Parents with their children came together at the beautiful site of “Seminarhotel Kletzmayr” in Styria. Because of the warm weather the activities for the Rett-Girls and their siblings took place outside. The carers for the Rett-girls/boys are trained experts for impaired people and have been […]

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2017 summercamp in Sæby, Denmark from Rett Syndrome Norway

  Text by Trine Pernille Krüger. Photos by Therese Steinnes Christensen. For the 7th time NFRS (Rett Syndrome Norway) arranged a summer- camp for its members. Rett-girls and their fa- milies travelled to Sæby, Denmark from july 30th. to august 6th. This year 18 families participated, 4 of them from Denmark. For some families this […]

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A “deep breath” for parents – the 2017 Family weekend in Austria

By Stella Peckary. The very popular and pleasurable family weekend of the Austrian Rett-Syndrome Association was attended by about 20 Families with Rett-Syndrome Children (Ladies), their siblings and Carers. It started on Friday afternoon with the annual Board meeting. The come together and exchange of private information and experiences of family members is always the […]

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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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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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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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28th French Rett Syndrome Association family weekend

For the 28th time, the Rett Syndrome French Association (AFSR) organised their family weekend days which took place in the “Center Parcs” of Sologne from 3 till 6 of June. 361 attended the weekend, 90 families, 83 Rett girls and 1 Rett boy. The families stayed in nice cottages surrounded by trees and had the opportunity to […]

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