The 6th European Rett Syndrome Conference took place in Tampere, Finland on September 27th and 28th. The Finish Rett Syndrome Association did an excellent job and was incredibly hospitable to around 180 participants from 18 countries worldwide. Over the course of these two days, participants were invited to join parallel sessions. Many excellent speakers well-known […]
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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Austrian Rett Syndrome Association Family Information Day
On October 5th, 11 Rett families and eight carers met for information exchange in the Seminarhof Kletzmayr St. Marien, Austria. After the welcome and presentation of the daily program Stella and Gerhard Peckary reported on their participation in the 6th European Rett Syndrome Congress in Tampere (Finland). News from interesting studies on epilepsy, behavioural problems, […]
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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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Dr Gvantsa Kvantaliani from Georgia visits Rett Expertise Centre of Maastricht
Last week RSE brought dr Gvantsa Kvantaliani from Georgia in touch with Rett Expertise Centre of Maastricht. Here’s what she thought about her experience: I was very happy and had the honour to visit for a 1-week rotation in Maastricht University Medical Centre, Rett Expertise Centre with Professor. dr. Leopold M.G. Curfs. This was an […]
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Upcoming Events
Sep
30
Wed
2020
all-day
9th World Rett Syndrome Congress...
9th World Rett Syndrome Congress...
Sep 30 – Oct 3 all-day
RETT Syndrome Association of Australia is organising the 9th World RETT Syndrome Congress in the Gold Coast in Queensland, Australia on Wednesday the 30th of September until Saturday the 3rd of October 2020. Please join[...]
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