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. Registered Charity No. 1054033.
Chairman – David Axtell (Essex)
Vice-Chairman – Andrew Conlon (Surrey)
Treasurer – Andrew Borge (Herfordshire)
Hon. Secretary – Tom O'Neill (Gtr Manchester))
Rachel Davies (Worcs); Faye Kett (Norfolk); Catherine McCarney (Gtr Manchester); Adele Noonan (Shropshire); Sara Peaford Smith (Essex); Ginny Penney (Essex); Ryan Saunders (Essex).
Medical Director Global SAC representation – Dr Peter Gillett
Honorary Life President - Alan Peaford (Essex)
General Manager – Jacquie Griffin
Chairman - Professor Chris Oliver (Birmingham University - Psychology)
Secretary - Dr Jo Moss (Birmingham - Psychology)
Dr Peter Gillett (Edinburgh - Gastroenterology)
Dr Jenny Sloneem (London - Psychology)
Dr David Fitzpatrick (Edinburgh - Paediatrics & Genetics)
Sara Peaford (Essex - Speech and Language)
Professor Frank Kaiser (Lübeck, Germany - Molecular Genetics)
Professor Raoul Hennekam (Netherlands - Paediatrics & Genetics)
Dr Penny Fallon (London - Neurology)
Dr Emma Tonkin (Glamorgan - Molecular Research)
Dr Ross Breckenridge (London - Molecular Research)
Professor Peter Hammond (Associate)