Text by Trine Pernille Krüger. Photos by Therese Steinnes Christensen. For the 7th time NFRS (Rett Syndrome Norway) arranged a summer- camp for its members. Rett-girls and their fa- milies travelled to Sæby, Denmark from july 30th. to august 6th. This year 18 families participated, 4 of them from Denmark. For some families this […]
European Rett Syndrome Congress, Berlin: connecting people – sharing knowledge
CALL FOR ABSTRACTS – DEADLINE EXTENDED Scientific knowledge at the highest levels; experts from Europe, the USA and Australia, and affected families in an exchange of ideas The deadline for abstracts has been extended until 31.08.2017 Genetics and research, transition and aging, activities and participation, pain, orthopedics and physiotherapy as well as new treatment options… […]
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A “deep breath” for parents – the 2017 Family weekend in Austria
By Stella Peckary. The very popular and pleasurable family weekend of the Austrian Rett-Syndrome Association was attended by about 20 Families with Rett-Syndrome Children (Ladies), their siblings and Carers. It started on Friday afternoon with the annual Board meeting. The come together and exchange of private information and experiences of family members is always the […]
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The actual situation and tendencies in Research: Santander 2017 – Highlights
By Thomas Bertrand. SANTANDER (Spain) 10-13.07.2017 In the Beautiful city of Santander, at the historical Palace of Magdalena, took place a conference on Rett Syndrome. The aim of the conference was to refocus the fundraising in the country for research on Rett syndrome in creating a common fund between the Spanish and Catalan associations: FINRETT. […]
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EURORDIS Membership Meeting 2017 – Full report
By Danijela Szili. EURORDIS Membership Meeting 2017 This year’s membership meeting took place in Budapest from 19-20 May. It gathered around 300 participants from all over Europe and some from USA, Iran, India, Canada and China. It started with EURORDIS General Assembly for members only. As it is the case every year the Activity Report […]
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