Dear Friends, As you are aware, RSE recently appointed a new board. We have been busy over the last couple of months reviewing things and thinking about future work etc. We are very keen to hear from our members; what is important to you, how can RSE help you and your families, what sort of […]
Rare Disease Day 2021
28th of February is Rare Disease Day! Today we take the opportunity to join a global community raising awareness of rare diseases. 1:17 people will be affected by a rare disease in their lifetime. View the official Rare Disease Day video: Rett Syndrome is one of Rare diseases. It affects 1:10,000 females and 1:40,000 males. […]
RettEd: How Your Child’s Data is Shaping the Future of Rett Research
Date: Tuesday, January 19Time: 1-2:30pm (EST) For the last 16 years, the NIH-funded Natural History Study for Rett Syndrome has been collecting data from over 1000 Rett families. Hear from NHS Principal Investigators, Drs. Alan Percy, Jeffrey Neul, and Eric Marsh on how your data has helped change the management of children and adults with Rett syndrome […]
Russian Rett Syndrome Association – October Awareness Event
In the framework of the project of the Russian Rett Syndrome Association (2020-2021, No. 20-1-027505, Directorate: Development of Public Diplomacy) “Mutual Support: International Cooperation on behalf of Children”, the project team visited Minsk, Belarus on 24-27 October 2020. The Russian project team, consisting of the coordinator, director, operator and medical expert, was in Minsk at […]
RSE executive board changes
On the 21st of November RSE General Assembly faced a big challenge – to form a new executive board that will be leading RSE for the next 3 years. Specific board positions were assigned during the first newly elected board meeting that took place last night. We are pleased to announce the freshly formed team […]
Save the date!
We are happy to share the announcement of an online conference organized by Rett UK with an amazing group of international Rett experts. It’s open to anyone – parents and professionals – and it’s free to attend! Presentations will be recorded and free to access after the event for the registered participants. Don’t miss your […]
Special online home schooling for Hungarian Rett girls during covid-19 lockdown
RSE is always happy to share good practices of our member associations. This time we are very pleased to share the initiative carried out in Hungary during these difficult COVID-19 times. In Hungary, schools – including special schools – have been closed since 16 March due to the coronavirus pandemic. This situation has put all […]
Release of Rett Syndrome Communication Guidelines
We are happy to share the news from Rett Expertise Centre Netherlands-GKC and Rettsyndrome.org about the release of the NEW Rett Syndrome Communication Guidelines: A handbook for therapists, educators and families. The digital download is free and can be downloaded as many times as you need.You can choose to download the complete handbook or individual […]
Professor Huda Zoghbi and Professor Sir Adrian Bird have been awarded The Brain Prize 2020
We are excited to announce that Professor Huda Zoghbi and Professor Sir Adrian Bird have been awarded The Brain Prize 2020, worth 10 million Danish kroner. The Brain Prize 2020 was awarded for their fundamental and pioneering work on Rett syndrome which established the importance of epigenetic regulation in both brain development and the maintenance […]
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 […]