Replays of all the presentations are now available on the event website.
Rett syndrome is a rare, genetic, neurological disorder affecting mainly females (1:10,000) and very few males. It is present from conception. After a period of ‘near normal’ development, the child experiences a regression in key skills, usually mobility, speech and hand use between the ages of one and two years. The child may appear very withdrawn during this stage and this often leads to a misdiagnosis of being on the autistic spectrum. Multiple comorbidities appear post regression including epilepsy, breathing disruption, scoliosis, gut and bowel problems. Whilst the disorder is genetic, in the majority of cases it is not inherited. Rett syndrome is usually caused by a fault on a gene called MECP2 which is found on the X chromosome. People with Rett syndrome have profound and multiple physical and learning disabilities. They are totally reliant on others for support throughout their lives, yet they are radiating love and enjoying their life to the fullest.
Rett Syndrome Europe is a small, not for profit, voluntary led organisation established in 1994 (reorganised in 2001) to serve the interests of families across Europe affected by this devastating disorder. The board are all parents of people with Rett syndrome.
A recent development of Rett Syndrome Europe, The Scientific Advisory Board, brings together some of the most well known and active scientists, researchers and therapists in Europe. Working together for the benefit of our families.
Rett Syndrome Europe currently has 25 member countries; either represented by a formal organisation or an individual. We welcome new applications and will support individuals who wish to formalise support in their country.
Lots of important and useful resources for families seeking to understand more about how Rett syndrome affects their daughter or son, what they can do to help them and find support for themselves. We aim to bring you regular updates not just from Europe but from around the world.
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 …
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 …
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 …
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 …
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 …
Adele Smolansky is a Guest Blogger and a senior studying Computer Science at Cornell University. She is also a sister to Lara who has Rett Syndrome, and the founder of an educational technology start-up that …
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 …
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 …
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. …
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, …
