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Dankeschön! Read the 2014 RSE general assembly summary

On November 15 we held our annual General Assembly meeting of Rett Syndrome Europe in the beautiful city of Vienna. Our Austrian friends from ÖRSG hosted the meeting and kindly arranged the organisation of the day. We had the pleasure to have most of the European associations representing Rett syndrome present, plus the Russian Association, […]

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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 good […]

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Rett UK Regional Day

By Yvonne Milne. Families gathered together in Thornbury, outside Bristol for a south west Regional Day. These events, which are free to families, normally take place in a special school and New Siblands Secondary School was an excellent venue. It was a modern building with lots of space and facilities. After registration, settling in and […]

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SAVE THE DATE! Rett Benefit Day on 31.05.2014 in Dortmund

By Wilfried Asthalter. Since 2003 there is a Benefit day organized every year in Germany. The organizing team leaded by Uwe Straube and the patron Erdal Keser has organized this special day on May 31, 2014 in Dortmund. The event takes place in the foreststation Aplerbecker in Dortmund and begins at 13:00 clock. It offers […]

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Strong and Weak – Mother’s Day Fundraising Concert

By Danijela Szili. Organized by the Hungarian Rett Syndrome Foundation, the concert took place on April 29, in the Atrium Theatre in Budapest. Very professionally organized by Edinger Katalin and Szucs Alexandra, two moms and board members of our small but very active Foundation, it attracted a lot of attention in the social media and […]

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A day on eye-gaze communication for professionals working with Rett Girls

By Martine Gaudy. A day on eye-gaze communication for professionals working with Rett Girls. On 6th of March 2014 took place in Paris, on the premises of the Rare Diseases Alliance, a day of presentation of techniques and devices for eye gaze dedicated to Rett girls. I had the chance to discover this technology during […]

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Come Closer: a photo exhibition and auction for the Girls with Rett Syndrome

By Danijela Szili. In July 2013 a special venture has taken place in the organization of the Hungarian Rett Syndrome Foundation. We have envisioned a series of 10 photographs, each illustrating a famous actor and a girl with Rett syndrome. Our purpose on one hand is to raise awareness about this rare genetic disease, and also to […]

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Save the date: The 7th European Conference on Rare Diseases & Orphan Products

ECRD 2014 – 8 to 10 May 2014 Andel’s Hotel, Berlin, Germany Save the date! more infos here.

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3rd European Rett Syndrome Conference “Research Update and Preventive Management”

By Martine Gaudy and Thomas Bertrand – Maastricht – Netherlands – 17 to 19 October 2013 After those of Milan (2009) and Edinburgh (2010), the third European Rett Syndrome Conference (ERSCM 2013) was held in Maastricht in the Netherlands. ERSCM 2013 is an initiative of the GKC (Gouverneur Kremers Centrum), Stichting Terre (Dutch Rett Syndrome Foundation) and NRSV (Dutch Rett Syndrome Association) […]

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