Find out more about our work and how your money makes a real difference

Our work

We raise funds to support children affected by genetic disorders.

There are around 6,000 genetic disorders.

It is estimated that one in 25 children is affected by a genetic disorder. 30,000 babies and children are newly diagnosed in the UK each year.

Some genetic disorders are apparent at birth while others are diagnosed at different stages throughout childhood, and sometimes into adolescence.

Please take a look below to learn more about the children we support and the difference your donations make.


Tom has Cockayne syndrome, a rare premature ageing condition. In this film, his sister Ellie explains what life is like for Tom.

How your money helps

Skye has Rett syndrome that is robbing her of her ability to walk, feed herself or even speak. Money from Jeans for Genes Day enabled her special school to buy an eye-gaze machine that allows her to communicate with others.