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 The child may appear very withdrawn during this stage and this often leads to a misdiagnosis of being on the autistic spectrum.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.
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.
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.
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.
The latest press release from Taysha announces that they have got the go-ahead to include adolescents age 12 years and over in their trial. The third patient to be dosed is expected to be in …
2nd to 5th October 2024 in Queensland, Australia The Rett Syndrome Association of Australia are delighted to announce that after a couple of postponements due to the pandemic the congress is very much back on! …
Ever since Rett syndrome stole Angelina's ability to walk, talk and communicate I've asked myself daily, What is she thinking? How is she feeling about this or that? She's always been very expressive and …
One of the Spanish associations, Mi Princesa Rett are delighted to announce an event at San Juan de Dios hospital in Barcelona on December 16th. Please see poster for more information. Mi-Princesa-event-Dec-23Download The team there …
Many thanks to Mel Lancaster, USA, for sharing her very honest thoughts on the impact of Rett syndrome for all the family. 'Someone asked me recently, “What is the meaning of all this suffering?” Make …
We are delighted to share the report from our colleagues in Georgia, Gvantsa and Tina, who hosted a highly experienced team from the Netherlands between the 13th and 19th October 2023. Gerna Scholte, Hanneke Borst, …
We are delighted to share another beautiful example of the importance and power of AAC. Ruth is a wonderful young lady from Belgium who enjoys her moments of communication so much! There is not a …
Continuing our Rett Syndrome and AAC Awareness Month campaign, we are honoured to share the experience of Johanna´s family and their journey with joys and challenges in their use of the Tobii device. Please join …
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 …
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! …
