Podcast no 29 : Jenny Downs : Environmental enrichment intervention for Rett Syndrome: an individually randomised stepped wedge trial. ‘This study reinforces why an enriched environment is so important. Not only do children gain important gross motor skills that enable them to be able to explore and have enriched experiences, they also have a physiological […]
Rett Syndrome Russia Shares New Rehab Film
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 […]
Rett Syndrome Awareness Campaign
October is Global Rett Syndrome Awareness Month! A chance for us all to raise awareness of this rare disease! We all know as parents how devastating a diagnosis of Rett syndrome is – we see and feel the impact everyday, in everything we do. None of us chose this path but it is the one […]
Call for photos
October is Rett Syndrome Awareness month. We would like to dedicate it to the quality of life of our Rett people and raise awareness that despite all the challenges, the life of our Rett children and adults is rich in activities, joy and love. Therefore, we invite you to send us photos of Rett people […]
Hungarian Rett summer camp vibes
The Hungarian Rett Syndrome Foundation has been organizing therapeutic summer camps for girls with Rett Syndrome every year since 1995. This year they took place in Hajdúszoboszló on two occasions in July and August. Organizing a holiday with activities for the children is an important part of the foundation’s parental support programs, because during the summer […]
RSE General Assembly meeting 2021
Upon the request of our members and due to another Rett event happening on the 20th of November, RSE has decided to change the date of the Annual General Assembly meeting, which will be held online on the 27th of November, 10:00 a.m. CET. Please mark the new date in your calendars and follow our […]
An Invitation to Take Part in a Research Study
“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 […]
#30MillionReasons
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 […]
RSE Membership Survey results and next steps
Many thanks to everyone who completed our Membership Survey. It is really helpful in allowing us to plan better to meet your needs and interests as members. Please take a look at a brief report of the results and our plans of action as a response to your expectations. The aims and activities of RSE […]
A busy May for RSE!
Feels like a rush hour! In just a few weeks we´ve participated in 3 different events: May 12-14 – EURORDIS Membership meeting During this 3 days online event different countries and representatives of various rare diseases shared their thoughts, struggles and experiences of this extraordinary pandemic year. Despite all the challenges of COVID we all […]