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 […]
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 […]
Extraordinary Matteo
I came into the world on an afternoon in May 2018. May, the 1st to be exact. No Labor Day for my parents that year. After a rough arrival, I extended my stay at the hospital due to an infection. The first of a long series… My name is Matteo Covini, I am 4 years […]
Males with Rett
RSE sent a joint letter with Rett UK to Rett Syndrome News to address concerns that their articles do not recogise the fact that some males with Rett syndrome can and do survive beyond infancy. Thank you to Kate Cahill Ferdinandsen for bringing this matter to our attention and providing links to relevant research articles. […]
Network Support and Research Event Registration – Replays Available!
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, […]
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. […]
New Gene Therapies announced
Spring 2022 has been very productive season for Rett scientists bringing hope to our families. We are happy to share some exciting news with our community. 29th March 2022 Taysha gene therapies annoucned that their Clinical Trial Application (CTA) had been approved by Health Canada. TSHA-102, which utilises the novel miRARE platform to regulate transgene expression […]
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 […]