The Quirón Foundation, with the help of the Catalan Association for Rett Syndrome, organized the fifth edition of the Conference on Rett syndrome, with the aim of providing care for girls, the necessary information for early diagnosis and better treatment of the disease. This new edition, which took place on Saturday, April 11 in Barcelona, […]
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 […]
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, […]
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 […]
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) […]
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 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 […]
