Latest news

Network Support and Research Event coming soon!

We are delighted that Rett Syndrome Europe has been successful with their funding application for  29,976 Euros to the European Joint Programme for Rare Diseases Network Support Scheme. The main meeting will be held in Budapest, Hungary with satellite meetings in the UK, Netherlands, Serbia, Georgia, Croatia and Turkey. The meetings will be on 17/18 […]

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 […]

General Assembly 2022

Please join us for our General Assembly 26th November 10am to 1.30pm CET The invitation with relevant papers and registration link have been emailed to our members. Please contact us in case you haven´t received it and would like it to be resent. Membership Fees – Many thanks to the organisations that have responded already to our call […]

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. […]

New Course from Meir Lotan

Physiotherapy and Health Promotion for Individuals with Rett Syndrome Very experienced and knowledgeable specialist physiotherapist Meir Lotan will be teaching this course between the 19th September – 20th October 2022. The lessons, in English, will be held twice weekly on Mondays and Thursdays at Israeli hours 16:00-21:00The cost is 550$ per student. The recorded lectures […]

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. […]

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