Rett syndrome is a complex neurological disorder. It affects mainly girls. Although present at birth, it is usually undetected until the child is approaching one year of age, when major regression occurs. 

Genetic but not hereditary, it could happen in any family at any time.  Something goes wrong with the genetic makeup of the cells which become the baby.  One in 10,000 girls is affected.

Whilst there is variability in the severity of the disorder, most people with Rett syndrome have a profound and multiple learning disability and are highly dependent on others for all their needs throughout life.  Increasingly, people with Rett syndrome live well into their 50s and beyond.

We are a national charity seeking to Make Change Happen for people living with Rett syndrome. We aim to do that by:

• Identifying people with Rett syndrome. There are 2400 in the UK and we know of only half that number at present.

• Offering practical help, friendship and support to people living with Rett syndrome as individuals, families and other carers and supporters

• Providing high quality up to date information about best practice in treatment and care

• Promoting greater understanding and awareness of Rett syndrome amongst the general public and amongst medical professionals.

• Funding research into the cause and treatment of Rett syndrome and towards an eventual cure

We rely almost entirely on donations and grants for our income.  Please help us to Make Change Happen

Registered charity no: 327309