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 The child may appear very withdrawn during this stage and this often leads to a misdiagnosis of being on the autistic spectrum.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

#EyeCanTalk – Rett syndrome and AAC awareness month
It is not a coincidence that our last Family Focus story was dedicated to communication. If you haven´t got a chance to read this wonderful story yet … please do, it is very moving and …
First Newsletter from MECP2 Duplication Syndrome Community – in English, German and French
Congratulations to David and colleagues for getting their first newsletter out in German, English and French! We look forward to hearing more about your work and will support your endeavours as much as we can! …
Latest update from Taysha gene therapy
Taysha today shared the latest update on their gene therapy programme with the second person now having received the therapy and a third planned for later this year. You can read their announcement and their …
Call for GA Meeting and Expression of interest
As we gear up for the upcoming General Assembly Meeting, we invite passionate individuals who share our commitment to the Rett syndrome community to consider contributing to the organisation by joining the board. We seek …
Eye Got the Power: Milestones and Miracles in Our Rett Family’s Communication Journey
By Usree Bhattacharya It is poignant to me that the only video I have of my little girl, Kalika, speaking by mouth is the one in which she repeats after me: “I. Love. You.” When …
Latest Update From Taysha Gene Therapy Programme
News on the first patient dosed with their gene therapy and next steps in respect of expanding the trials… Taysha-Rett-Community-Letter-August-14-2023Download
Latest Update From Taysha Gene Therapy Programme
Taysha have shared the news today that they have been given the all clear to continue with their plans to dose the second adult with Rett syndrome in their gene therapy trial in Canada. You …
Overview of the Network Support and Research event 2023
RSE board are very pleased to present an overview of the March 2023 Network Support and Research event (see the document below). We would particularly like to draw your attention to the outcomes and action …
CGPMax supplement
We have been made aware of this product, a natural supplement to support brain health, by a parent of a girl with Rett syndrome in Spain whose daughter has been taking it. The product has …
A football match to raise funds and promote awareness of Rett syndrome
Our new member from Spain – Mi Princesa Rett – are organising a football event with the "Legends of the Spanish national team" and the "Legends of the Badajoz football team" on the 30th of …
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