News Invitation to participate in a sleep study for Kleefstra syndrome Katerina Tzimourta, 19 December 2022August 19, 2026 As has been observed, sleep problems are frequently reported in individuals with Kleefstra syndrome, yet little is known about their sleep quality. The purpose of this new study is to gain a better overall picture of...
News Speech and language webinar in Kleefstra syndrome Katerina Tzimourta, August 12, 2022August 19, 2026 On August 17th, an online seminar on speech and language in Kleefstra syndrome will take place to improve our understanding of speech and language abilities in Kleefstra syndrome. The...
News Establishment of IDefine Europe for the European Kleefstra syndrome community Katerina Tzimourta, July 10, 2022August 19, 2026 Recently, Tanja Zdolšek Draksler took over the creation of IDefine Europe, aiming to strengthen the Kleefstra syndrome community in Europe. Tanja is an active and tireless researcher, as well as the mother of a child...
News IDefine and the creation of an international community for Kleefstra syndrome Katerina Tzimourta, 16 February 2022August 19, 2026 In recent years, one of the most significant developments for the Kleefstra syndrome community has been the creation of IDefine, a non-profit organization aiming to bring families closer together, enhance research...
News GENIDA: Digital data recording and collection for Kleefstra syndrome Katerina Tzimourta, September 16, 2017August 19, 2026 In December 2016, Dr. Kleefstra sent a message to the administrators of kleefstrasyndrome.org to be published on their page. In her message, she asks for cooperation from all parents and relatives of children with...
News Rare Disease Day 2017 Katerina Tzimourta, February 28, 2017August 19, 2026 The last day of February is dedicated to raising awareness about rare diseases and the impact they have on patients’ lives. According to 80%, 80% of these conditions are genetic, while the rest are the result of…