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. Reference: Access aggregated data from Orphanet at Orphadata. Orphadata: Free access data from Orphanet. © INSERM 1999. Available on http://www.orphadata.org. Data version October 2024
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.
Advocacy Organizations
CCHS Network
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 Inc
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
Project CASK
VISION Project CASK believes in a world free of the life limitations and debilitating effects of CASK gene disorders. MISSION To accelerate breakthroughs in research to develop treatments and a cure for CASK gene disorders. VALUES Collaboration. Transparency. Urgency.
Syndromes Without A Name (SWAN) Australia
Provide information, support and advocacy to families caring for a child with an undiagnosed or rare genetic condition.
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Clinical Trials
For a list of clinical trials in this disease area, please click here.