Welcome to our website.  Whether you are personally affected by the syndrome, know somebody affected, or are a professional looking to find out more about 22q Deletion Syndrome, we hope that you can find all the information you need on this site.

The 22Crew is the only registered charity supporting 22q DS in the UK run exclusively by parents of children with the syndrome. We are thus completely motivated to ensure our members interests come first.

There are many sites dedicated to supporting families affected by 22q DS but we aim to offer you everything you need here.  As well as our own content, we'll provide you with numerous links to other sources of information.  We operate as a lean organisation, using the newest web technology to connect our members, collaborate with our colleagues and volunteers, attract fundraising, publish information and organise events at the lowest cost possible to ensure we maximise the value of all donations. 

Our inspiration is our own children.  The founders each have teenage sons with 22q DS.  Over the past decade, knowledge about the syndrome has accrued as research progressed.  Much knowledge tends to be centred around babies, young children, the common heart defects, palate problems, speech and language issues and psychiatry. Recently efforts have been focussed on genetics.  

As our own 22q DS children navigate their teenage years, The 22 Crew want to concentrate research and support for young people and adults as we are aware that this group of individuals are currently under-served.

We are registered as a charity in the United Kingdom with Her Majesty's Revenue and Customs, and have also secured charitable status with the UK Charity Commission.

If you have any feedback about the content and usability of this site, please send your comments via our contact us page.

UK Registered Charity No.1146975