» Is there any research being carried out on the syndrome?

Yes, the Foundation is supporting a major research project in the Department of Human Genetics at Newcastle University to identify the faulty gene that causes the de Lange SyndromeWe are also involved in a project with Birmingham University investigating challenging behaviour in CdLS. This project is funded by the National Lottery Charities Board.

Many other research projects being carried out in both Britain and North America looking at many different aspects of the syndrome including social development, speech, language development and hearing. The result of these projects will be published in the medical literature and information will be distributed to families through the de Lange Syndrome Foundation.