First and foremost, thank you everyone who joined our GA meeting. Even though online events have their limitations, we are very happy about your active participation and engagement in the discussions. For everyone who participated and would like to look back, as well as for those who missed it, please find below the interactive slides […]
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 […]
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 […]
Rett Syndrome Communication Guidelines are now available in English and Spanish
We are happy to share the news about the release of Spanish version of the Rett Syndrome Communication Guidelines: A handbook for therapists, educators and families. Thanks to a wonderful collaboration of Spanish Rett Syndrome Association as well as Catalan Rett Syndrome Association this is a first official translation of this outstanding resource for anyone interested […]
Rett UK Online Conference for Families
We are Happy to share yet another wonderful event organized by our member Rett UK. A six-day free online conference will cover a wide variety of topics and presenters. All the talks will be recorded and available for reviewing later as well. All information and registration: Rett UK Online Family Roadshow 2021 by Rett UK […]
Call for RSE membership update
Dear Friends, As you are aware, RSE recently appointed a new board. We have been busy over the last couple of months reviewing things and thinking about future work etc. We are very keen to hear from our members; what is important to you, how can RSE help you and your families, what sort of […]