In RSE we understand that research is essential for overcoming Rett Syndrome one day. We also know that it is one of the main topics of interest for families and everyone who faces Rett in their life. Therefor, RSE is taking new actions to keep you up to date with all relevant information regarding research in Rett Syndrome.
Scientific Advisory Board
Rett Syndrome Europe are delighted to announce we now have a Scientific Advisory Board!
Scientific Advisory Board members are:
Gill Townend – Chair of SAB
Aglaia Vignoli, Ana Abdala, Anne-Marie Bisgaard, Bernd Wilken, Bojana Milanov, Danijela Szili, Helena Wandin, Jean-Christophe Roux, Meir Lotan, Michelle Stahlhut, Peter Marschik, Sonia Guil.
Clinical Trials
Information on clinical trials is constantly changing, but we will be posting latest updates in our research blog to keep you up to date as much as possible on the latest advancements. However, for the full list of complete information on clinical trials in Rett Syndrome, please visit the link below:
Research news
Taysha expand age group in gene therapy trial in Canada to 12+ years.
The latest press release from Taysha announces that they have got the go-ahead to include adolescents age 12 years and over in their trial. The third patient to be dosed is expected to be in …
Latest update from Taysha gene therapy
Taysha today shared the latest update on their gene therapy programme with the second person now having received the therapy and a third planned for later this year. You can read their announcement and their …
Latest Update From Taysha Gene Therapy Programme
News on the first patient dosed with their gene therapy and next steps in respect of expanding the trials… Taysha-Rett-Community-Letter-August-14-2023Download
Latest Update From Taysha Gene Therapy Programme
Taysha have shared the news today that they have been given the all clear to continue with their plans to dose the second adult with Rett syndrome in their gene therapy trial in Canada. You …
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 …
Update from Anavex Life Sciences clinical trial
Anavex Life Sciences Corp. announced the completion of the ANAVEX®2-73 (blarcamesine) U.S. Phase 2 study in Rett syndrome. The Company expects to announce topline results from this study in the next quarter. ANAVEX®2-73 is an …
Taysha administered the first dose of investigational gene therapy drug
These are definitely exciting and hopeful times for Rett community. Taysha Gene Therapies have announced that the first patient was dosed with the investigational gene therapy, TSHA-102, in the REVEAL Adult Study, a clinical trial …
Latest Press Release from Taysha
11th May 2023 Taysha have shared a press release with news about their gene therapy for Rett syndrome. Taysha has completed screening and scheduled dosing for the first potential participant in the Phase 1/2 REVEAL …
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 …
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 …
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 …
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, …
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 …
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 …
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 …
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 …
An Invitation to Take Part in a Research Study
"Hello! My name is Usree Bhattacharya and I am mom to a 5-year-old girl, Kalika, with Rett syndrome, and a faculty member in the College of Education at the University of Georgia (US). My training …
RettEd: How Your Child’s Data is Shaping the Future of Rett Research
Date: Tuesday, January 19Time: 1-2:30pm (EST) For the last 16 years, the NIH-funded Natural History Study for Rett Syndrome has been collecting data from over 1000 Rett families. Hear from NHS Principal Investigators, Drs. Alan Percy, Jeffrey …
Professor Huda Zoghbi and Professor Sir Adrian Bird have been awarded The Brain Prize 2020
We are excited to announce that Professor Huda Zoghbi and Professor Sir Adrian Bird have been awarded The Brain Prize 2020, worth 10 million Danish kroner. The Brain Prize 2020 was awarded for their fundamental …