Rett UK

Imagine being told your toddler you thought was healthy but perhaps slow to progress, in fact had a rare and devastating disability called Rett syndrome. A disability so complex it would leave them needing lifelong 24/7 care.   Children with Rett syndrome appear to be born perfectly normal but by 18 months they start to regress. They lose hand function, can no longer hold toys or feed themselves. By age three they could start having seizures, stop talking, walking and steadily their spine could start to curve. Rett syndrome is the most common genetic cause of severe disability in females, yet very few people have ever heard of it. Although rare, males can have Rett syndrome too. People with Rett syndrome have profound and multiple physical and learning disabilities and are totally reliant on others for support throughout their lives.

These are the families Rett UK supports and where your support is life changing.  Rett UK is the only UK charity which provides professional support to people living with Rett syndrome across the UK.

Rett UK was founded in 1985 around a kitchen table by Yvonne Milne MBE. Since then Rett UK has grown to be the leading provider of information to not only families but also medical professionals new to the world of Rett syndrome.  Rett UK is a national charity dedicated to supporting and empowering people with Rett syndrome and their families.

Our vision is that everyone with Rett syndrome is given every possible opportunity to achieve their individual potential so that they may live their life to the full.

We are a small team working on a national level. We receive NO government funding and rely entirely on donations and grants to fund our work.  

Support Today, Hope for Tomorrow.