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Eurordis CEF Workshop 26-27 October 2017 report

By Thomas Bertrand. During the first day, Councils of European Federations (CEF) and Councils of National Alliances (CAN) gathered in Paris to learn about the recent work from Eurordis (RareConnect, RareBarometer, an update from the Eurordis position paper on social policy and the announcement of the next ECRD in Vienna 2018). An Update on ERN […]

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Rett Syndrome Europe new board – a message from the president

(from left to right: Danijela Szili, Yvonne Milne, Wilfried Asthalter, Stella Peckary, Caroline Lietaer)   To succeed Thomas Bertrand as a president will be a honour and a challenging assignment. He was an excellent president and exceptional person. His mandate was over, we would have loved to keep him for many more years. I want […]

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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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Centre Rett

Presentation of the French “Rett Centre”

     Physician coordinator: Pr Nadia BAHI BUISSON, neuropediatrician Health Care Coordinator: Elisabeth CELESTIN Due to their multiple disability status, most families lack landmarks to identify professionals and have difficulties to organise path of care, which is often complicated and full of obstacles. The Rett Centre is there to accompany them.    1st mission: Care […]

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29th French National Rett Days

By Thomas Bertrand. 29th French National Rett Days On 7Th and 8th October took place the French National Rett Days. During the weekend around 250 people gathered in Paris to meet and listen to scientific talks and participated to workshops. Professor Milh (Hopital La Timone – Marseille) started the weekend with a full story about […]

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