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We are Happy from AFSR

French Rett girls, joy, happiness and cool music! The French Rett Association (AFSR) is proud to share its own version of the “Happy” video clip from Pharell Williams. Enjoy! Rett Syndrome is the first cause of genetic multiple-disability hitting girls in France. There is no known cure as of today despite a better understanding of […]

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 […]

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 […]

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 […]

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 […]

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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