What is CCHS?

Congenital Central Hypoventilation Syndrome (CCHS) is a rare genetic condition which results in an abnormal development of the body’s automatic nervous system in early fetal life. The main consequence is a failure to automatically control breathing, which is always present during sleep, but may occur in some individuals when they are awake.

There are thought to be over 100 affected families in the UK.

For more information and connections with groups around the world, please browse our links.

Watch our video to find out more


Our mission statement

The CCHS Support group provides support for and links families affected by CCHS throughout the UK. It organises conferences for families to meet up and share experiences. These events are also an opportunity to invite CCHS physicians and researchers to share their insight on research and treatments.