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About
What is CCHS?
CCHS Diagnosis
The Genetics of CCHS
CCHS Symptoms and Medical Management
Respiratory Management
Understanding Breathing
Routine Monitoring
CCHS Transitions
Resources
Genetic Testing Centers
Physician List
Important Links
Transition to Adulthood
Casting a Light Stories
Education Videos
CCHS Durable Medical Equipment Grant Application
Research
CCHS Network Call for Research 2025
One World Registry
Funded Research Projects
Clinical Trials
CCHS Grant Awards
2023 CCHS Science Conference
2023 CCHS Science Conference Speaker Summaries
Fundraising
CCHS Network Operations
Donate
CCHS Day 2024
Contact
Donate
Links to Other Groups - deactivate
International CCHS Networks
Brazilian CCHS Network
European CHS Network
French CCHS Family Network
German Undine Syndrom Selbsthilfegruppe
Italian CCHS Family Network
Japan CCHS Group
Polish CCHS Network
Spanish CCHS Family Network
United Kingdom CCHS Network
Additional Links
Childrens Hospital of Los Angeles (CHLA) Video on Pacing and Mechanical Ventilation
Avery Biomedical Statement on Diaphragm Pacing and Airport Security
International Ventilator Users Network (IVUN)
Hirschsprung’s & Motility Disorders Support Network
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