By Danijela Szili. EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 585 rare disease patient organisations in 54 countries covering over 4000 diseases. Every year EURORDIS organizes its Membership Meeting in a different European city. This is an occasion for patient representatives to gather and learn from each other. The EURORDIS Membership Meeting 2013 […]
By Stella Peckary. In the middle of Austria, in Hipping, on the Attersee-lake, 21 Rett-Families from all parts of Austria came together from June 14th -16th, to spend a nice weekend. On Friday afternoon was the Board meeting to talk about important agendas of the Association. After Dinner, Gerhard and Stella talked about activities […]
By Martine Gaudy During three days, from 18th 20th May, the French Rett Syndrome Association celebrated their 25th Anniversary. Over 320 people, including 65 girls, gathered in Nantes for this beautiful event. This was an exceptional get together, as grandparents had been specially invited for this occasion, together with parents of course, siblings, and friends. […]
By Olga Timutsa. The EUPATI 2013 Conference: A Vision For 2020 took place in Rome in April 19, 2013. The Rome conference, held just 14 months after the launch of EUPATI (European Patient’s Academy on Therapeutic Innovation). More than 180 delegates from 28 countries were there to hear about the plans under way for three […]
By Jordi Serra. On March 2, 2013 took place the 3rd Catalan Rett Syndrome Day: “Update on Research, Emotional Wellness, Disability and Guardianship at the Teknon Medical Center in Barcelona” http://www.teknon.es/jornada-rett/programa In this conference, the Teknon Foundation, and the Catalan Association for Rett Syndrome provided the latest information on Rett research and updates for early […]
By Danijela Szili. The DIA (Drug Information Association) is global-wide working association which provides networking opportunities and information about innovation in science and pharmacy by organising events and training courses over the entire world. The biggest get-together on our continent this year was the Euromeeting 2013 (March 6th RAI centre, Amsterdam) with more than 3,000 participants. […]
The 3rd European Rett Syndrome Conference Maastricht, “Research Update & Preventive Management” (ERSCM 2013), will take place on October 17th – 19th, 2013 at the MECC inMaastricht, The Netherlands. For more information on registration and program please visit: http://www.ersmc.eu ERSCM 2013 is an initiative of the GKC (Gouverneur Kremers Centrum), Stichting Terre (Dutch Rett Syndrome Foundation) and NRSV (Dutch Rett Syndrome Association) and […]
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By Eleonora Misiarz (eleonorabaran@wp.pl) The summer camp is organized regularly in June by the Polish Rett Association. Last couple of years we have been meeting in Mielno on the Polish Coast. The camps are a good opportunity to meet other parents and their kids. The idea for the meeting of the families is more to get […]
