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 The child may appear very withdrawn during this stage and this often leads to a misdiagnosis of being on the autistic spectrum.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

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 comming soon!
The board of Rett Syndrome Europe and our Scientific Advisory Board are delighted to announce that we have been successful in a bid for 30,000 Euros to run our Network Support and Research Event 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 …
Mille’s Secret World: Living with Rett Syndrome
A delightful new video about living with Rett syndrome. Mille and her mum Susanne live in Denmark. Many to them both for sharing their story in such a positive way. Despite the shock and devastation …
Airett Conference
Airett are delighted to announce that after an absence of two years they will be hosting a hybrid event on 10th and 11th June 2022. THE THEMES OF THE CONFERENCE Scientists and researchers will provide …
Support for Families in Ukraine
You are not alone! We know that nothing will ever compensate the tragedy of suffering a war, but we´ll do our best to support all Rett families who had to face it. Wether you are …
Inna´s victory
Inna is 9 years old and lives in France with her family. Her mother, Elsa Delhelle Gasnier, says that since Inna was diagnosed with Rett syndrome, their family schedule got filled with never ending medical …
AIRETT International Call for Research Projects
AIRETT is delighted to announce its second international call for base, clinical and rehabilitation research projects on Rett syndrome. They believe that the work of different research centres (even with international collaborations) could help speed …
Scroll to top