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 […]
Update from Neurogene
Since Neurogene received a lot of questions from the Rett community about the upcoming gene therapy trial they announced earlier this year, they prepared a letter with some answers to the frequently asked questions. Please read the document bellow.
Neurotech International to launch clinical program into use of lead drug NTI164 to treat Rett Syndrome
Clinical-stage biopharmaceutical development company Neurotech International (ASX: NTI) has launched a new clinical program into the use of its daily oral cannabinoid-based drug to potentially treat Rett Syndrome in female patients. The program will comprise a filing for Human Research Ethics Committee (HREC) approval and the commencement of a phase two clinical trial investigating the […]
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 […]
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, […]