Centre Rett

Presentation of the French “Rett Centre”

     Physician coordinator: Pr Nadia BAHI BUISSON, neuropediatrician Health Care Coordinator: Elisabeth CELESTIN Due to their multiple disability status, most families lack landmarks to identify professionals and have difficulties to organise path of care, which is often complicated and full of obstacles. The Rett Centre is there to accompany them.    1st mission: Care […]

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29th French National Rett Days

By Thomas Bertrand. 29th French National Rett Days On 7Th and 8th October took place the French National Rett Days. During the weekend around 250 people gathered in Paris to meet and listen to scientific talks and participated to workshops. Professor Milh (Hopital La Timone – Marseille) started the weekend with a full story about […]

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2017 summercamp in Sæby, Denmark from Rett Syndrome Norway

  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 […]

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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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