About Genetic Disorders UK

Genetic Disorders UK is a registered charity with a vision to improve the lives of individuals and families affected by genetic disorders.

While individual genetic disorders are rare, it is thought that there are currently more than 6,000 diagnosed disorders and new disorders are being identified every day. It is estimated that 1 in 25 children is affected by a genetic disorder. This means that in the UK, 30,000 babies and children are newly diagnosed each year and more than half a million children and adults are living with a genetic disorder.

Our mission is to be the leading source of information and support for both those affected by a genetic disorder, and the charities and patient groups that support them, by bringing together everyone’s combined experience in a place it can be shared.

Genetic Disorders UK is run by a small team that also organises the annual Jeans for Genes Day fundraising event.

We are hoping that by raising as much money as possible on Jeans for Genes Day we will be able to launch much needed support services and increase the number of grants we provide to disorder-specific charities.

Our website content is written by individuals who are either affected by a genetic disorder themselves or are in a family affected by a genetic disorder. If you would like to contribute to our work either by writing about your experience or sharing information, please contact us.

Our team

Our team

We are a small team and together we run Genetic Disorders UK and the Jeans for Genes Day campaign, Primary Immunodeficiency UK and the Chronic Granulomatous Disorder Society.

Please call 020 7199 3300 if you would like to speak to any of us.

Our team
Our mum's panel

Our mum's panel

The content on the GDUK website was the brainchild of our Mum's Panel, a group of women from all walks of life whose children happen to have genetic disorders. We eventually intend to establish a Dad's Panel too so contact us if you would like to become involved. Here are the Mums' stories:

Our mum's panel
Our corporate supporters

Our corporate supporters

With thanks to our Corporate Supporters.

Our corporate supporters