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 […]
RSE working together with EFNA (European Federation of Neurological Associations)
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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, 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
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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