Mission
The groups have a common mission.

"The CdLS Foundation exists to ensure early and accurate diagnosis of CdLS ; promote research into the causes and manifestations of the syndrome and help people with a diagnosis of CdLS to make informed decisions throughout their lifetime"

In the UK the Foundation is run entirely by volunteers including parents and professionals.

What Does the Foundation Do?
The Foundation has its own Scientific Advisory Council (SAC) which includes medical professionals from around the world. The SAC also has a network of associate members of different disciplines in different countries who provide support and advice for people with CdLS wherever they may be.

It is a guiding principle of the CdLS Foundation and its SAC that information should be shared. Doctors regularly travel to different parts of the world to share their experiences and talk to careers of affected CdLS people.

The Foundation runs a global conference every two years – Year 2001 is in California, USA - and the CdLS UK and Ireland group have a major conference every four years.

The group also holds family meetings twice a year where families get to meet each other and get the chance to talk informally about the condition and learn from the experiences of others. This moves around the regions and in recent years meetings have taken place in Glasgow, Bournemouth, Manchester, Dublin, Warwickshire and York.

There are also mini-conferences "CdLS Connections" for careers and professionals that focus on specific elements of the conditions. A conference is planned for Essex in Autumn 2001.

The Foundation has a helpline which is manned by volunteers. We also produce booklets and other information packs about the condition which are sent to careers and professionals to spread awareness and provide basic information about CdLS.

There is also a quarterly newsletter "Reaching Out UK & Ireland" which covers news stories about the research developments, families news and raises issues affection people with CdLS.

There is no charge for people with a CdLS family member but donations of £15 a year are welcomed as a fair contribution towards the running costs of the group..

The Board
The Foundation is run by a Board of Trustees who serve for a three-year term.

The current Board is:
Alan Peaford, (Essex) Chairman of Trustees
Charles Maynard (Warwickshire) Vice Chairman
Richard Simmonds (Shropshire) Hon. Treasurer
Alison Rich (Essex) Hon. Secretary
Heather Young (Berkshire)
Professor Chris Oliver (West Midlands)
David Axtell (Suffolk)
Lorraine Hawthorne (Staffordshire)
Tom O’Neill (Cheshire)
Steve Penney (Essex)
Dr. David Fitzpatrick (Edinburgh)
John Leonard (Dublin)
Derek McNamee (Dublin)
Sharon Brown (Greater Manchester)
James May (Sussex)