We have been made aware of this product, a natural supplement to support brain health, by a parent of a girl with Rett syndrome in Spain whose daughter has been taking it. The product has been developed for the aged population and not specifically to help with Rett syndrome. It has not been subject to […]
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 […]
Latest Press Release from Taysha
11th May 2023 Taysha have shared a press release with news about their gene therapy for Rett syndrome.
ActiveRett!
The team at Telethon Kids in Australia led by Dr Jenny Downs have developed a new online resource to help families and carers support people with Rett syndrome to live more physically active lives. They are inviting family members and carers anywhere in the world to look at the ActiveRett web page and evaluate it […]
Taysha Gene Therapy Update
In their press release dated 28th March 2023 Taysha shared important updates to their gene therapy programme for Rett syndrome. Read the full press release here. Taysha has initiated screening of the first potential participant in the Phase 1/2 REVEAL adult study in Canada and is planning to dose the first participant with the investigational […]
Taysha Gene Therapy Updates
Today, Wednesday 1st February 2023, Taysha Gene Therapies shared a letter to the Rett syndrome community with an update on the gene therapy they have developed. The REVEAL study is for female adults and the first site is in Canada. This is a phase 1/2 clinical trial mainly testing the safety and tolerability of the […]
How AI-Learners Can Help Kids with Rett Syndrome Learn Math
New Video From Germany!
Voiceover: What is Rett Syndrome Many thanks to Gabi Kessler and colleagues at Rett Deutschland e.V. for this lovely video. Stilianos Brusenbach (his daughter is 27 years old) explains how important it is to talk to other affected families.Jens Philippi is with her daughter Anna who is 6. Anna has been riding for 4 years […]
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. […]