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Rett Syndrome Europe meets in Copenhagen

            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, […]

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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 […]

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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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