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 […]
Press conference on the presentation of the next World Congress on Rett syndrome
By Olga Timutsa. On January 30, 2015 in the Civic Chamber of the Russian Federation on the initiative of the Civic Chamber of the Republic of Tatarstan and the Association for Assistance to Rett syndrome patients the following events were held: 1. Press-conference on presentation of the World Congress on Rett syndrome in Russia 2. Roundtable on «Medical and social support and quality of life for girls with Rett syndrome» topic […]
Rett Syndrome Europe wishes you a happy holiday season
Wishing you warm holiday greetings from RSE!
We are Happy from AFSR
French Rett girls, joy, happiness and cool music! The French Rett Association (AFSR) is proud to share its own version of the “Happy” video clip from Pharell Williams. Enjoy! Rett Syndrome is the first cause of genetic multiple-disability hitting girls in France. There is no known cure as of today despite a better understanding of […]
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, […]