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.


Our Objectives

  • Networking people affected by CCHS
  • Advocating for people affected by CCHS
  • Providing CCHS education
  • Supporting CCHS research