RSE 2014 General Assembly in Vienna – UPDATE!

Dear Members of RSE, All members of the Rett Community are warmly invited to the next General Assembly of Rett Syndrome Europe that will take place in VIENNA – Austria on: Saturday 15th November 2014, 9 30 am Venue: Kolping Wien Zentral 1060 WIEN, Gumpendorfer Strasse 39 Seminar Room: Kardinal König Saal, Hausteil 2, Stiegengasse [...]

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Summer Camp for Rett Girls and Their Families in Hungary

By Danijela Szili. This year we were lucky to be in Balatonöszöd, in a very nice house complex on the Balaton coast. We had 46 participants, 14 Rett individuals, girls from 3 to 26 years old, 9 siblings, 3 fathers, 14 student therapists and aids, five moms and one therapist and member of the board [...]

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Family days in Grenoble – France

By Martine Gaudy.   The family days of the Rett Syndrome French Association took place in Grenoble on 17th and 18th of May 2014. Over 160 people from all the regions of France gathered in the beautiful Hotel Mercure and those two days were a very good get together of families, owing to the very [...]

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4th Catalan Day on Rett syndrome in Barcelona

By Jordi Serra and Thomas Bertrand. On 8th March, took place at the Centro Médico Teknon in Barcelona, the 4th Catalan day on Rett Syndrome. This year the main topic was “From Research to Assistance in Adulthood”. Rett Syndrome is a neurological disorder that occurs mainly in girls. It is caused by altered regulatory process [...]

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7th European Conference on Rare Diseases & Orphan Products

7th European Conference on Rare Diseases & Orphan Products 8-10 May 2014 – Berlin Germany By Danijela Szili and Thomas Bertrand. The ECRD conference was organised by Eurordis and co-organised by DIA. It gathered more than 750 stakeholders including patient representatives, health professionals, scientists, industry, policy makers, regulators and payers from 40 countries. The first [...]

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