RSE held its general assembly on 26/10/2018 to present the activity report and to discuss future plans. This year’s GA meeting took place in Copenhagen, Denmark. Our friends from Landesforeningen Rett Syndroms hosted the meeting and kindly arranged the organisation of the two days To make it more interesting, […]
French Rett Syndrome Family Days – 06/10 and 07/10/2018 in Paris
The French national days for Rett syndrome celebrated the 30 years anniversary of the French Rett Association. There were 223 participants. We could see in the corridor a nice overview of the history of the association. As usually the themes presented were very interesting: you can see the program in the picture. A surprising and […]
Rett Rome Report
Rett Rome 2018 took place from September 27-29th and gathered 170 participants from 4 continents and 17 different countries. The aim of this very well organized scientific meeting on the 27th and 28th was to provide a platform for discussion on recent advances in basic, translational and clinical research on Rett syndrome. The meeting also […]
RSE working together with EFNA (European Federation of Neurological Associations)
By RSE board member and ePAG Yvonne Milne The EURORDIS Winter School that took place in Paris in March was a great opportunity for those attending to share information and network with other rare disability group representatives. We soon learnt that we had so much in common, with shared values and missions. As a result […]
Austrian Rett-Syndrome Association (ÖRSG) Family Weekend 2018
On the weekend from June 22nd to 24th 2018 the yearly family weekend took place in the wonderful surroundings of Attersee-Lake and the pre-alpine landscape. Nearly 100 attendants – parents, Rett-girls, Rett-boy, siblings, carers and speakers were very pleased and appreciated the “come together” of the Rett-families. During the Board meeting on Friday afternoon, the […]
RSE is represented at the inaugural Eurordis Winterschool Paris, march 2018
As a RSE Board member and ePAG patient representative for the ITHACA ERN, I was privileged to be invited to attend this new initiative, which was held at the IMAGINE Institute, Paris March 19 – 23. It was financed through the EU funded Solve-RD project, of which EURORDIS is a partner. The aim of the […]
AIRETT International Call for Research Projects on Rett Syndrome
AIRETT, the Associazione Italiana Rett Onlus (no-profit Italian Rett Association) that brings together the families of children affected by Rett syndrome (RTT), intends to contribute to the development of basic research activities, applied clinical research, and development of new rehabilitation approaches focusing on RTT (MeCP2, CDKL5 and FOXG1 genes). We are seeking grant applications that […]
Rett Meeting Rome 27-29 September 2018
Italian foundation ProRett Reserca is organizing an international scientific meeting in Rome this year. For more details please check the website of the event: https://www.rettrome2018.org/
Enhancing collaborations between Rett Centers
Representatives of the recently opened Rett Center in Paris and the Maastricht Rett Expertise Center meet together on 15/02/2018 with the president of Rett Syndrome Europe in Paris to discuss new ways of working together. The team of Paris was represented by: Dr Nadia Bahi Buisson, Dr Marie Hully, Prof Brigitte Fauroux, Dr […]
Berlin Congress Report
Country update Berlin 2017 – by Stella Peckary A poster walk of 27 posters with a country update of 25 Rett-Association took place on Friday, during lunch time. A representative of each country was invited to speak briefly about recent activities, National Centres for Rare Diseases and Rett specialist services in his their country. The […]