Latest news

Covid Boosters for People with Rett Syndrome

Lots of families are considering whether their daughter/son with Rett syndrome should have the booster Covid jab. Here Ana Abdala, member of our Scientific Advisory Board, gives her view which we hope you will find helpful. ‘A search of multiple databases did not return any specific studies of COVID vaccination in people who have Rett […]

General Assembly 2021

Please join us for our General Assembly 27th November 10am to 1.30pm CET The agenda and invitation with relevant papers have been emailed to our members. Please contact us in case you haven´t received it and would like it to be resent. We are delighted that two members of the Scientific Advisory Board will be […]

Hello Camille!

In the second of our Family Focus features, Laetitia and Nicolas from Belgium, share their story about new diagnosis and how meeting a family who were so positive really helped in those early days. ‘Since her birth, Camille has been our sun during the day as well as our little star at night … she […]

New Podcast by Jenny Downs

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 […]

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