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 […]
Rett girl pupils at the primary school ZS Zahradka In the previous past years, seven girls with the Rett Syndrome (RTT) have been attending the primary school “Zahradka” in Prague. It is a rather unusual experience due to a frequency of occurrence of girls with RTT in Czech population. Thanks to this experience we had […]
Wishing you warm holiday greetings from RSE
PRESS RELEASE Milan, December 3, 2013 – It was held at the headquarters of the IRCCS – Istituto di Ricerche Mario Negri in Milan, the first operational meeting dell’AIRETT RESEARCH TEAM Consortium created by renowned Italian research institutes that are involved in a joint effort to study Rett Syndrome, a rare disease, little known to the general public, for […]
ECRD 2014 – 8 to 10 May 2014 Andel’s Hotel, Berlin, Germany Save the date! more infos here.
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) […]
