By Michal Kozisek. The 8th Rett Community Czech Family event took place from June 27th to July 4th at Hodonin near Kunstat in the Moravian region. We have set a record this year. More than 80 people – 15 families with Rett syndrome girls, 16 caretakers and other organisers. Rich 7-days programme contained: – Presentations and workshops for […]
European Conference in Rome – a message from the RSE board members
Dear Members of the Rett Community, We are very proud to inform you that the next Rett Syndrome European Conference will take place in Roma from 30th of October to 1st of November 2015. This Conference is organized by the Italian Rett Syndrome parents Association AIRETT, with the help of Rett Syndrome Europe. On this occasion, we […]
La Course Des Héros 2015, Paris & Lyon, France
In Paris and Lyon, June 2015 took place the annual event of The Race of Heroes (La Course des Héros), where people can run 6 or 10 km to raise money for their favorite association. The idea is simple, to be able to run and support one association, one would need to raise at least […]
Austrian Rett-Syndrome Association Family weekend
By Stella Peckary. This year again many Rett-families joined a common weekend. 19 Rett-Girls and boy had their own attendant. This gave us parents the chance to attend the program. We all were lucky with the weather, so many of the attendants took the chance to go for a walk with the girls. On Friday […]
Eurordis Membership Meeting 2015
By Danijela Szili. Each year, the EURORDIS Membership Meeting provides over 200 patients, patient organisations, policy makers and other stakeholders with networking opportunities and capacity-building workshops to improve the lives of those living with a rare disease. The EURORDIS Membership Meeting workshops are designed to allow patients to develop the knowledge and ability to advance […]
5th Catalan Rett Syndrome Day
The Quirón Foundation, with the help of the Catalan Association for Rett Syndrome, organized the fifth edition of the Conference on Rett syndrome, with the aim of providing care for girls, the necessary information for early diagnosis and better treatment of the disease. This new edition, which took place on Saturday, April 11 in Barcelona, […]
Registration for the 4th European Congress on Rett Syndrome in Rome is now open
Countdown to the 2016 World Congress on Rett syndrome
The Athletics Marathon will be held in Kazan on May 10, 2015. As part of the Kazan marathon held Championship of Russia among the youth marathon. Championship of Russia among the youth marathon will be held in the framework of the Kazan marathon. There will be races for 42.195 km 21.097 km and 5 km. […]
2015 Congress for Consensus in Pediatrics & Child Health
The 4th Global Congress For Consensus in Pediatrics & Child Health (CIP2015) took place March 19-22 in Budapest, Hungary. Dr Gerard Nguyen was representing Rett Syndrome Europe, the French Rett Syndrome Association and the Hungarian Rare Diseases Alliance. Dr Nguyen gave a talk entitled “Rare Diseases: From Best Care to Innovative Cure”. The presentation pointed […]
Dankeschön! Read the 2014 RSE general assembly summary
On November 15 we held our annual General Assembly meeting of Rett Syndrome Europe in the beautiful city of Vienna. Our Austrian friends from ÖRSG hosted the meeting and kindly arranged the organisation of the day. We had the pleasure to have most of the European associations representing Rett syndrome present, plus the Russian Association, […]