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 The child may appear very withdrawn during this stage and this often leads to a misdiagnosis of being on the autistic spectrum.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.

About Us

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.

Scientific Advisory Board

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.

Membership

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.

Family Resources

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.

Latest news

How AI-Learners Can Help Kids with Rett Syndrome Learn Math
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 …
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 …
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 …
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 …
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. …
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 …
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 …
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 …
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 …
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 …
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