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 letter to Rett community bellow.
Call for GA Meeting and Expression of interest
As we gear up for the upcoming General Assembly Meeting, we invite passionate individuals who share our commitment to the Rett syndrome community to consider contributing to the organisation by joining the board. We seek members who are not only driven by a passion for Rett syndrome but also possess skills that can fuel our […]
Eye Got the Power: Milestones and Miracles in Our Rett Family’s Communication Journey
By Usree Bhattacharya It is poignant to me that the only video I have of my little girl, Kalika, speaking by mouth is the one in which she repeats after me: “I. Love. You.” When I captured that moment with my phone many years ago, I had no idea that it would be the last […]
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…
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 can read their letter here.
Overview of the Network Support and Research event 2023
RSE board are very pleased to present an overview of the March 2023 Network Support and Research event (see the document below). We would particularly like to draw your attention to the outcomes and action plans for each country that participated. In addition, since the event, the presentations have been translated into Spanish, Italian, Finnish, […]
CGPMax supplement
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 […]
A football match to raise funds and promote awareness of Rett syndrome
Our new member from Spain – Mi Princesa Rett – are organising a football event with the “Legends of the Spanish national team” and the “Legends of the Badajoz football team” on the 30th of June 2023 at 21h. Mi Princesa Rett is a charity foundation based in Badajoz, Spain, dedicated to raising awareness and […]
Wearable devices to capture sleep problems
Today we would like to share an interesting article that discusses the challenges of studying sleep problems in autistic people. Historically, research participants have had to sleep in a lab while connected to cumbersome equipment such as polysomnography, which can be uncomfortable and interfere with sleep, particularly for someone with autism who may also have […]
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 Kaufmann will present an overview of the Burden of Illness in Rett Syndrome survey. Previous studies have shown that individuals […]