We are delighted to share this file “We Can. We do” which was made as part of the Russian Rett Syndrome Association’s project “Mutual Help: International Cooperation for Children” no. 20-1-027505. The project was the winner of the Presidential Grant fund competition. The film is one of four films in the project. It reflects facets […]
“Hello! My name is Usree Bhattacharya and I am mom to a 5-year-old girl, Kalika, with Rett syndrome, and a faculty member in the College of Education at the University of Georgia (US). My training and expertise is in language and literacy socialization, and since my daughter’s diagnosis in 2018, I have been conducting ethnographic […]
Share your reason for action on rare diseases! Rett syndrome is one of around 6000 rare diseases but is one the more common ones affecting 1;10,000 females and 1;40,000 males. We do not know how many people there are living in Europe with Rett syndrome but there are 30 million people living with a rare […]
Ann-Charlotte is 73 years old and lives in Sweden. Many thanks to Ann-Charlotte, her family and Helena Wandin at The National Rett Centre in Sweden for permission to share this story in the first of our new Family Focus features. ‘Ann-Charlotte “Lottan” Holmström is most probably the oldest person with Rett Syndrome in Sweden and […]
We are all hoping this will go ahead in 2022! Please make a note in your diary and keep an eye on the website as we update you with more information about the event. https://rettworldcongress.org/
Date: Tuesday, January 19Time: 1-2:30pm (EST) For the last 16 years, the NIH-funded Natural History Study for Rett Syndrome has been collecting data from over 1000 Rett families. Hear from NHS Principal Investigators, Drs. Alan Percy, Jeffrey Neul, and Eric Marsh on how your data has helped change the management of children and adults with Rett syndrome […]
In the framework of the project of the Russian Rett Syndrome Association (2020-2021, No. 20-1-027505, Directorate: Development of Public Diplomacy) “Mutual Support: International Cooperation on behalf of Children”, the project team visited Minsk, Belarus on 24-27 October 2020. The Russian project team, consisting of the coordinator, director, operator and medical expert, was in Minsk at […]
