Cornelia de Lange Syndrome Foundation

104 Lodge Lane
Grays
Essex
RM16 2UL

Tel: 01375 376439
Web: www.cdls.org.uk

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.

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.

The foundation has a helpline which is manned by volunteers. They also produce booklets and other information packs about the condition which are sent to carers 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 affecting 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.