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 […]
Mille’s Secret World: Living with Rett Syndrome
A delightful new video about living with Rett syndrome. Mille and her mum Susanne live in Denmark. Many to them both for sharing their story in such a positive way. Despite the shock and devastation of the diagnosis they learn to move forward and Mille’s personality shines through bringing joy and laughter to everyone she […]
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 […]
Inna´s victory
Inna is 9 years old and lives in France with her family. Her mother, Elsa Delhelle Gasnier, says that since Inna was diagnosed with Rett syndrome, their family schedule got filled with never ending medical appointments, which many times feel like a stressfull battlefield: “Appointments, appointments, always appointments… Good news and bad news… When we […]
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 work towards a cure for the disorder. Research groups can ask for up to 100,000 euros for a two-year project. […]
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 had met both it’s endpoints demonstrating an improvement on the Rett Syndrome Behaviour Questionnaire and the Clinical Global Impression of […]
General Assembly activity report and recordings of presentations
First and foremost, thank you everyone who joined our GA meeting. Even though online events have their limitations, we are very happy about your active participation and engagement in the discussions. For everyone who participated and would like to look back, as well as for those who missed it, please find below the interactive slides […]