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Stories, statements and updates from Rett Syndrome Europe and our member associations across Europe.
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Overview interesting Resources in Covid times
Rett Syndrome Europe is happy to give you an overview of the interesting resources which are available and organized by different associations in different languages in these period of lockdown ALL LANGUAGES Free games in all languages: Gazeplay is a free and open-source software which gathers several mini-games playable with an eye-tracker : https://github.com/GazePlay/GazePlay ENGLISH…
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Newly founded Croatian Rett Syndrome Foundation – Silent Angels and their first big event in Rijeka
From October 17th to 19th Neurology forum for neurodegenerative diseases was held at the University Campus in Rijeka, organized by Dr. Vuletić, the head of the Neurology clinic based in this beautiful city on the Adriatic coast. Despite the fact that Rett syndrome is not a neurodegenerative disorder Dr. Vuletić invited Prof. Curfs and Smeets…
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Both Artistic and Therapeutic Rett Summer Camps in Hungary organized by Hungarian Rett syndrome Foundation
Since its foundation in 1995, the Hungarian Rett Syndrome Foundation has been organizing therapeutic summer camps for children and adolescents with Rett Syndrome. The girls are all with multiple special needs and in need of full care, so organizing the camp involves a lot of coordination and preparation. In Hungary, it is very difficult to…
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Austrian Rett Syndrome Association (ÖRSG) Family Weekend, June 21 – 23, 2019
by Stella Peckary In Hipping, close to the lake Attersee, 22 Rett families with their girls/boys and siblings met on a sunny weekend in June. The Board of ÖRSG met on Friday afternoon for planning the organisation of upcoming events 2019/2020 and welcomed a new Board member – Elisabeth Nimmerrichter, who will also take over…
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AIRETT Congress – 1st and 2nd June 2019
AIRett devoted the first two days of June to its periodical National Congress organized this year in Cervia – “New Borders in Rett Syndrome: a Glance towards the Future” – with novel therapeutic international strategies being the main theme of the Conference. Rett families as well as experts interested in the syndrome (more than 250…
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Congratulations to dr Gillian Townend with her PHD
We congratulate Dr. Gillian Townend with her successful PhD defense the 4 th of July at the University of Maastricht Rett Syndrome: “Recognising the Communication Challenges, Needs and Potential of Individuals Living with a Rare Disease” It was an honour to be there and we would like to express our gratitude in name of all…
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Rett Disorders Alliance Health Checklist
The Rett Disorders Alliance UK (Reverse Rett, Rett UK and FOXG1) are delighted to bring you The Rett Syndrome Health Checklist. The Health Checklist provides information to help with symptom identification and management including suggestions for drugs which may help and those which may cause difficulties for people with Rett syndrome. There are also links…
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News from the Russian Rett Association
The Rett Syndrome Association (Russia) has been implementing a project on creating Rett syndrome resources in Russian language since 2017. The start to the project was given by the VIII World Congress on Rett syndrome, which was held in Kazan in May 2016. In 2018, within the framework of the “Mutual Support” project (winner of…
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7th South East European Rare Disease Conference
This conference took place on the beautiful lake Ohrid. Ohrid and Lake Ohrid were accepted as Cultural and Natural World Heritage Sites by UNESCO. Ohrid is one of only 28 sites that are part of UNESCO’s World Heritage that are Cultural as well as Natural sites. Regional meeting for rare diseases patient advocates took place…
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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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