On 3-16 June 2016, Polish Rett Syndrome Association organised a rehabilitation camp for children with Rett Syndrome at Zabajka Hippotherapy and Rehabilitation Centre in Stawnica. As many as 21 girls participated in this event. The youngest participant was 2.5 years old, whereas the oldest one was 11. Similarly as two years before, some of the […]
European Conference on Rare Diseases and Orphan Products 26-28 May 2016 (Edinburgh)
By Danijela Szili. Around 750 participants from the countries all over the globe gathered in Edinburgh at the EICC (Edinburgh International Conference Centre) for the EURORDIS Membership Meeting (EMM) and 8th European Conference on Rare Diseases and Orphan Products with a slogan Game Changers in Rare Diseases. The 26th of May was reserved for the […]
28th French Rett Syndrome Association family weekend
For the 28th time, the Rett Syndrome French Association (AFSR) organised their family weekend days which took place in the “Center Parcs” of Sologne from 3 till 6 of June. 361 attended the weekend, 90 families, 83 Rett girls and 1 Rett boy. The families stayed in nice cottages surrounded by trees and had the opportunity to […]
6th Catalan family day – “The future begins today”
On May 21, at the Centro Médico Teknon in Barcelona, took place the 6th Catalan Family day on Rett Syndrome. This year the meeting was entitled « The Future begins today ». During that day, patient representatives, researchers, medical doctors, directors of medical centres and officials from the Ministry of Health gathered in front of around 80 […]
Spasibo! – VIII World Congress on Rett Syndrome: Report
The 8th World Congress on Rett syndrome took place in the millennium city of Kazan in the Tatarstan republic of the Russian Federation. There, international scientists and doctors met families and Rett girls for 5 days. The congress program included a plenary session during the first days then parallel sessions the following days. Visits of […]
The Russian Rett Syndrome Association invites you to participate
Rett Syndrome Association invites you to participate! The international Rett syndrome community is waiting for this event every four years. This year it will take place in the oldest and one of the most beautiful Russian cities Kazan, the largest religious, economic, political, scientific, educational, cultural and sports center of Russia with a 1000 year […]
Next European Rett Syndrome Congress – Berlin 2017
Dear Rett Community, we herewith like to inform the Rett-Syndrome Family, that the German Rett-Syndrome Association will organize the next European Rett-Syndrome Congress (ERSC) in Germany. The Congress will be placed in Berlin from 02. – 04. November 2017. During this event the German Rett-Syndrome Association will celebrate their 30th years anniversary. Further information will follow in due time. […]
AAC conference in Budapest
By Danijela Szili. The two-day conference (6-7 February) was organized in Budapest by the Hungarian Rett Syndrome Foundation, Hungarian Angelman Syndrome Foundation and Kapcsol-At Kft. who are the official Tobii distributers in Hungary. It was a huge event with almost 300 participants. Most of them were therapists from all over the country working with nonverbal […]
8th World Congress on Rett Syndrome – Registration continues!
By Olga Timutsa Dear Friends, please note that the registration for the World Congress on Rett syndrome to be held on 13-17 May 2016 in Russia, Kazan continues. All the necessary information can be found at worldcongress2016.rettsyndrome.ru Kazan is a beautiful and hospitable city with 1000 years of history. Many cultures, religions, traditions meet here in […]
Charity concert “For Silent Angels” in Poland
On 22nd of December Polish Rett Syndrome Association in cooperation with Kraków City Council organized a special charity concert “For Silent Angels” in Kraków, in ICE Kraków Congress Center. It were wonderful two hours full of the best music – classical, rock and folk. For our Silent Angels played Sinfonietta Cracovia, Grzegorz Majzel and folk […]