Congenital Central Hypoventilation Syndrome

Who to Contact
Where to Go to Chat with Others
Learn More About It
Web Sites
Search Google for "Central Hypoventilation Syndrome"

Who to Contact

Congenital Central Hypoventilation Syndrome Family Support Network
71 Maple Street
Oneonta, NY 13820
Phone: 607-432-8872
E-mail: VanderlaanM@Hartwick.Edu
Web: http://www.cchsnetwork.org/

The mission of the CCHS Family Support Network is to educate families, medical professionals and care-givers about CCHS and to advocate for optimal care for our children diagnosed with CCHS. We are an international group, working to connect CCHS families around the world in the effort of increasing awareness, interest in CCHS research and sharing news about new technologies used in the medical care of our children.

Where to Go to Chat with Others

• CCHS Group
  This is the place to find information and support for Congenital Central Hypoventilation Syndrome (CCHS). We will try to keep up-to-date on the latest medical advances as we provide a forum for family members to connect and share their stories.

Learn More About It

• An overview of Congential Central Hypoventilation Syndrome

• Congenital Central Hypoventilation Syndrome
  From the Online Mendelin of Man (OMIM)
   
• Ondine's Curse - From eMedicine

• Congenital Central Hypoventilation Syndrome Research Project
  Rush University Medical Center
   
• Gene secret of 'mythical curse'
  From BBC News - Health

Web Sites

• Massel Family Home

• CCHS Family Network