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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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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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Rett 2017 Berlin – early bird registration opened

Dear Friends, we are pleased to announce that the early bird registration is now accessible via the official website of the congress: http://www.rett2017.berlin RSE member representatives will soon receive instructions with a discount code for registration so please wait a few more days to receive the code and more details about the RSE General Assembly Meeting, via […]

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Rett university in Krakow, Poland 18 November 2017

The Polish Rett syndrome association is proud to organize the next Rett University featuring Susan Norwell, expert on alternative communication, during the event called “All Engaged, All Communicate, All Learn!”. A one-day day lecture followed by 2 days of consultation are on the program. Everyone is welcome to Krakow from 18 to 20 November 2017. […]

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AAC: Send stories and pictures now!

Important message from Gill Townend and Gerna Scholte (Researcher and Augmentative & Alternative Communication Expert, Rett Expertise Centre Netherlands). Dear friends, Individuals with Rett syndrome can communicate clever, funny and spot on messages. We are hoping you have many stories to share with us. Over the last 5 years the number of individuals with Rett syndrome that […]

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Rett syndrome is in the ERN called ITHACA

European Reference Networks (ERN) have started this month! Check out this nice video on European Reference Networks for rare and complex diseases. As a reminder Rett syndrome is in the ERN called ITHACA, which stands for Intellectual disability, TeleHealth And Congenital Anomalies http://europa.eu/!Dc93bF

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