Congenital central hypoventilation syndrome
Synonyms: CCHS | Congenital central alveolar hypoventilation syndrome | Ondine curse | Ondine syndrome
Congenital central hypoventilation syndrome (CCHS) is a rare disease due to a severely impaired central autonomic control of breathing and dysfunction of the autonomous nervous system.
Data from Orphanet are used to provide information on a disease's name, synonym(s), and overview.
Orphadata: Free access data from Orphanet. © INSERM 1999. Available on http://www.orphadata.org. Data version December 2023
Newly diagnosed with
Congenital central hypoventilation syndrome?
Our RARE Concierge Services Guides are available to assist you by providing information, resources and connections as you navigate your rare disease journey.
Building Community, Empowering Patients, Championing Research. The CCHS Network has a multi-focused mission of education and support of our families and CCHS patients, inter-family and family-physician communication, and supporting and facilitating CCHS research. Our vision is a future where CCHS is no longer a life-threatening diagnosis!
COMBINEDBrain is a consortium for outcome measures and biomarkers for neurodevelopmental disorders. We are collaborating to cure rare, non-verbal brain disorders.
Dysautonomia Support Network
Dysautonomia Support Network’s Mission is to provide a Community that Empowers and Supports those impacted by dysautonomia to live their best lives. DSN provides support through community, virtual support group meetings and amazing resources such as Handouts, Handbooks and our Dyscovery Education video series.
Moonshots for Unicorns
Curing single-gene disorders
To fund research for treatment and/or a cure for CASK Gene Disorder
Syndromes Without A Name (SWAN) Australia
Provide information, support and advocacy to families caring for a child with an undiagnosed or rare genetic condition.
For a list of clinical trials in this disease area, please click here.