Rett Syndrome

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 The child may appear very withdrawn during this stage and this often leads to a misdiagnosis of being on the autistic spectrum.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

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

#30MillionReasons
Share your reason for action on rare diseases! Rett syndrome is one of around 6000 rare diseases but is one the more common ones affecting …
Meet Ann Charlotte…
Ann-Charlotte is 73 years old and lives in Sweden. Many thanks to Ann-Charlotte, her family and Helena Wandin at The National Rett Centre in Sweden …
RSE Membership Survey results and next steps
Many thanks to everyone who completed our Membership Survey. It is really helpful in allowing us to plan better to meet your needs and interests …
A busy May for RSE!
Feels like a rush hour! In just a few weeks we´ve participated in 3 different events: May 12-14 – EURORDIS Membership meeting During this 3 …
New Dates Announced for the 9th World Congress!
We are all hoping this will go ahead in 2022! Please make a note in your diary and keep an eye on the website as …
Rett Syndrome Communication Guidelines are now available in English and Spanish
We are happy to share the news about the release of Spanish version of the Rett Syndrome Communication Guidelines: A handbook for therapists, educators and families. …
Rett UK Online Conference for Families
We are Happy to share yet another wonderful event organized by our member Rett UK. A six-day free online conference will cover a wide variety …
Call for RSE membership update
Dear Friends, As you are aware, RSE recently appointed a new board. We have been busy over the last couple of months reviewing things and …
Rare Disease Day 2021
28th of February is Rare Disease Day! Today we take the opportunity to join a global community raising awareness of rare diseases. 1:17 people will …
RettEd: How Your Child’s Data is Shaping the Future of Rett Research
Date: Tuesday, January 19Time: 1-2:30pm (EST) For the last 16 years, the NIH-funded Natural History Study for Rett Syndrome has been collecting data from over 1000 Rett …
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