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 […]
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 […]
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, […]
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 […]
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 […]
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 […]
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 […]