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. […]
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 […]
World Rett Syndrome Congress Rescheduled
Due to the current pandemia of COVID-19 that the world is fighting over the past months, Australian Rett Syndrome Association had to take a difficult decision and postpone the World Congress that was scheduled later this year. We share their message and hope to see each other again in 2021. Dearest Rett Families and Friends, […]
Project of a lifetime – “Mutual Support: Expanding Borders”
In 2019, the project “Mutual Support: Expanding Borders” was held for the Rett syndrome communities from Russia, Armenia, Kazakhstan and Moldova. Belarus also joined the project. There were organized trips for the experts and parent teams to these countries, as well as round tables, workshops, master classes, lectures, and parent sessions within the framework of […]
Update on the WORLD RETT SYNDROME CONGRESS to be held in Surfers Paradise from 30 September to 3 October 2020
Bill Callaghan, Vice-President of Rett Syndrome Association of Australia Inc. (RSAA) reached out to us to share the updates on the upcoming great event – World Rett Syndrome Congress. Please read his message bellow and check out the first information about the speakers of the congress in the file attached. The first World Rett Syndrome […]
6th European Rett Syndrome Conference, Tampere Finland
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 […]