The 4th Global Congress For Consensus in Pediatrics & Child Health (CIP2015) took place March 19-22 in Budapest, Hungary. Dr Gerard Nguyen was representing Rett Syndrome Europe, the French Rett Syndrome Association and the Hungarian Rare Diseases Alliance. Dr Nguyen gave a talk entitled “Rare Diseases: From Best Care to Innovative Cure”. The presentation pointed […]
By Olga Timutsa. On January 30, 2015 in the Civic Chamber of the Russian Federation on the initiative of the Civic Chamber of the Republic of Tatarstan and the Association for Assistance to Rett syndrome patients the following events were held: 1. Press-conference on presentation of the World Congress on Rett syndrome in Russia 2. Roundtable on «Medical and social support and quality of life for girls with Rett syndrome» topic […]
Wishing you warm holiday greetings from RSE!
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 […]
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, […]
Dear Members of RSE, All members of the Rett Community are warmly invited to the next General Assembly of Rett Syndrome Europe that will take place in VIENNA – Austria on: Saturday 15th November 2014, 9 30 am Venue: Kolping Wien Zentral 1060 WIEN, Gumpendorfer Strasse 39 Seminar Room: Kardinal König Saal, Hausteil 2, Stiegengasse […]
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 […]
