The Burden of Illness Study in Rett Syndrome

Following our Network Support and Research Event we would like to share a video of Walter Kaufmann presentation “Burden of Illness in Rett Syndrome: Initial Evaluation of a Disorder-Specific Caregiver Survey”. In this talk, Walter Kaufmann will present an overview of the Burden of Illness in Rett Syndrome survey. Previous studies have shown that individuals […]

Replays of Network Support and Research Event 

We are delighted that the Rett Syndrome Europe Network Support and Research Event was so successful. Many thanks to our funders The European Joint Programme for Rare Diseases Network Support Scheme and our sponsors Anavex, Taysha, Neurogene and Neuren for making this possible. Also thanks to our country hosts in Turkuye, Hungary, UK, Netherlands, Serbia, […]

European Rett Syndrome Congress 2023

The Rett Syndrome Association of France, AFSR are delighted to announce that they are hosting the 2023 European Congress in Marseille on 7th and 8th October 2023. The website is now live with the programme and information about the venue and accommodation. Rett Syndrome Europe will be holding their 2023 General Assembly there during the […]

Running for Rett!

Many thanks to Claudia Petzold, Rett Syndrom Deutschland e.V. for this great awareness raising event which you can get involved in wherever you are! Take the idea Make it specific to your organisation Choose where the funds raised will be donated 17 Sept – 15 Oct 2022 Featuring in Global Rett Syndrome Awareness Month an […]

Airett Conference

Airett are delighted to announce that after an absence of two years they will be hosting a hybrid event on 10th and 11th June 2022. THE THEMES OF THE CONFERENCE Scientists and researchers will provide updates on the latest clinical trials and what is on the horizon. A special attention will be paid to the […]

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 […]

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