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, […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
