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 The child may appear very withdrawn during this stage and this often leads to a misdiagnosis of being on the autistic spectrum.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


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

Latest Update from Taysha
In the latest update published today we learn that there have been no serious adverse effects from the treatment in both the adult and paediatric trials so far. Both groups are reporting improvements in seizures, …
Latest update from Taysha
Taysha today shared updates on their REVEAL Adolescent and Adult Study. Here is the letter to the community. Also read their press release though as there is much more detail there about the improvements seen …
Family Focus – Niki Konstaninou Without Wings
Many thanks to Niki and Petros who live in Cyprus for sharing their wonderful story. Niki-Konstaninou-Without-wingsDownload
Update from Neurogene Clinical Trial
Good news from Neurogene as they progress their gene therapy trial to the next stages. You can read their letter to the community here. neurogene-our-letter-to-rett-syndrome-community-march-2024Download
Latest Update on Taysha Gene Therapy
Summary The REVEAL Adolescent & Adult Study (females age 12+) will expand into the United States (U.S.) following submission of an investigational new drug application to the Food and Drug Administration (FDA). The REVEAL Adolescent …
A plain language summary of results from the LAVENDER study: trofinetide treatment for Rett syndrome
Many thanks to Future Rare Diseases for sharing this publication with us. You can read the full paper here.
Marking Rare Disease Day 2024
To celebrate Rare Disease Day 2024 one of our board members Bojana Milanov was interviewed by NORBS – the National Organisation for Rare Diseases of Serbia. Here we share her story. Many thanks Bojana. A …
Mum in Zurich Shares her Inspirational Story
Becky Jenner, President, had the pleasure of meeting Julia Ramlogan a couple of years ago when Julia launched her new organisation to raise awareness and help progress towards a cure. We are delighted to share …
Study about Males with Rett Syndrome
Dr Tim Benke, Medical Director of the Rett Center of Excellence at Colorado Children’s Hospital is the lead Principal Investigator in a study that is seeking to understand the lived experience of Males with Rett …
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