Rett Rome Report

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 […]

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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 […]

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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 […]

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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 […]

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AIRETT International Call for Research Projects on Rett Syndrome

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 […]

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Rett Meeting Rome 27-29 September 2018

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/

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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 […]

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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 […]

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European Rett Syndrome Congress in Berlin

European Rett Syndrome Congress in Berlin

5. European Rett Syndrome Congress, 2.-4. November 2017, Berlin The unique ambience of the Rett Congress in Berlin: international experts in a cooperative interchange with concerned parents “Connecting people – exchanging knowledge and experience!“ This was the motto of the 5th European Rett Syndrome Congress, which took place at the beginning of November 2017 in […]

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Eurordis CEF Workshop 26-27 October 2017 report

By Thomas Bertrand. During the first day, Councils of European Federations (CEF) and Councils of National Alliances (CAN) gathered in Paris to learn about the recent work from Eurordis (RareConnect, RareBarometer, an update from the Eurordis position paper on social policy and the announcement of the next ECRD in Vienna 2018). An Update on ERN […]

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