By Caroline Lietaer. An inspiring two-day training course was organised by the NRSV – Rett Syndrome Association Netherlands on 11 -12 November in Houten. Participating speakers included Hector Minto from Microsoft/Tobii, UK, Susan Norwell from Rett University USA and Gill Townend from Rett Expertise Centre Netherlands-Maastricht. The training course provided an opportunity for parents, speech […]
Vienna RTT 50.1 – Full Report
By Danijela Szili. RTT 50.1 Vienna 15-17 September This was not my first Rett conference but was a very special one. It was not just about scientific sessions or sessions about clinical issues and communication but also about history of Rett syndrome. We witnessed many wonderful speeches from physicians, scientists and parents who were here […]
SAVE THE DATE: 2-4 Nov 2017 – 5th European Rett Syndrome Congress in Berlin
For more information please have a look at http://www.rett2017.berlin
Rehabilitation camp for people with Rett Syndrome at Zabajka Hippotherapy and Rehabilitation Centre in Stawnica 2016
On 3-16 June 2016, Polish Rett Syndrome Association organised a rehabilitation camp for children with Rett Syndrome at Zabajka Hippotherapy and Rehabilitation Centre in Stawnica. As many as 21 girls participated in this event. The youngest participant was 2.5 years old, whereas the oldest one was 11. Similarly as two years before, some of the […]
European Conference on Rare Diseases and Orphan Products 26-28 May 2016 (Edinburgh)
By Danijela Szili. Around 750 participants from the countries all over the globe gathered in Edinburgh at the EICC (Edinburgh International Conference Centre) for the EURORDIS Membership Meeting (EMM) and 8th European Conference on Rare Diseases and Orphan Products with a slogan Game Changers in Rare Diseases. The 26th of May was reserved for the […]
28th French Rett Syndrome Association family weekend
For the 28th time, the Rett Syndrome French Association (AFSR) organised their family weekend days which took place in the “Center Parcs” of Sologne from 3 till 6 of June. 361 attended the weekend, 90 families, 83 Rett girls and 1 Rett boy. The families stayed in nice cottages surrounded by trees and had the opportunity to […]
6th Catalan family day – “The future begins today”
On May 21, at the Centro Médico Teknon in Barcelona, took place the 6th Catalan Family day on Rett Syndrome. This year the meeting was entitled « The Future begins today ». During that day, patient representatives, researchers, medical doctors, directors of medical centres and officials from the Ministry of Health gathered in front of around 80 […]
Spasibo! – VIII World Congress on Rett Syndrome: Report
The 8th World Congress on Rett syndrome took place in the millennium city of Kazan in the Tatarstan republic of the Russian Federation. There, international scientists and doctors met families and Rett girls for 5 days. The congress program included a plenary session during the first days then parallel sessions the following days. Visits of […]
The Russian Rett Syndrome Association invites you to participate
Rett Syndrome Association invites you to participate! The international Rett syndrome community is waiting for this event every four years. This year it will take place in the oldest and one of the most beautiful Russian cities Kazan, the largest religious, economic, political, scientific, educational, cultural and sports center of Russia with a 1000 year […]
Next European Rett Syndrome Congress – Berlin 2017
Dear Rett Community, we herewith like to inform the Rett-Syndrome Family, that the German Rett-Syndrome Association will organize the next European Rett-Syndrome Congress (ERSC) in Germany. The Congress will be placed in Berlin from 02. – 04. November 2017. During this event the German Rett-Syndrome Association will celebrate their 30th years anniversary. Further information will follow in due time. […]