Author: Becky Jenner

New Course from Meir Lotan

Physiotherapy and Health Promotion for Individuals with Rett Syndrome Very experienced and knowledgeable specialist physiotherapist Meir Lotan will be teaching this course between the 19th September – 20th October 2022. The lessons, in English, will be held twice weekly on Mondays and Thursdays at Israeli hours 16:00-21:00The cost is 550$ per student. The recorded lectures […]

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 […]

Apolline and Education

Hello, my name is Alice Seror. I am the mother of Apolline who is 6 years old. We live in the south of France with her dad and her little brother. What age did your child go to school? Apolline started school at the age of 4. In France, school starts at 3 years old. […]

Mille’s Secret World: Living with Rett Syndrome

A delightful new video about living with Rett syndrome. Mille and her mum Susanne live in Denmark. Many to them both for sharing their story in such a positive way. Despite the shock and devastation of the diagnosis they learn to move forward and Mille’s personality shines through bringing joy and laughter to everyone she […]

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 […]

Support for Families in Ukraine

You are not alone! We know that nothing will ever compensate the tragedy of suffering a war, but we´ll do our best to support all Rett families who had to face it. Wether you are a family in need or someone who wants to help, please check the information bellow. Clearly things can change quickly […]

AIRETT International Call for Research Projects

AIRETT is delighted to announce its second international call for base, clinical and rehabilitation research projects on Rett syndrome. They believe that the work of different research centres (even with international collaborations) could help speed work towards a cure for the disorder. Research groups can ask for up to 100,000 euros for a two-year project. […]

Trofinetide Update

Could Trofinetide be the first drug to be approved specifically to treat Rett syndrome? On 7th December 2021, Neuren announced positive ‘top line’ results for from the Phase 3 trial in Rett syndrome. The drug had met both it’s endpoints demonstrating an improvement on the Rett Syndrome Behaviour Questionnaire and the Clinical Global Impression of […]

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 […]

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