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European Rett Syndrome Congress 2023

The Rett Syndrome Association of France, AFSR are delighted to announce that they are hosting the 2023 European Congress in Marseille on 7th and 8th October 2023. The website is now live with the programme and information about the venue and accommodation. Rett Syndrome Europe will be holding their 2023 General Assembly there during the […]


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 […]

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 […]

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. […]

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