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The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.

CCHS Family Network (Congenital Central Hypoventilation Syndrome)

a/k/a: CCHSFN

Address

71 Maple Street
Oneonta, NY 13820
USA

Phone

607-432-8872

Fax

607-431-4351

800 Number

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TDD

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Email Address

vanderlaanm@hartwick.edu

Website

http://www.CCHSNetwork.org

The CCHS Family Network (CCHSFN) is a voluntary, non-profit, self-help organization dedicated to providing support and information to families with children affected by congenital central hypoventilation syndrome. Congenital central hypoventilation syndrome is a rare neurological disorder of infancy and childhood characterized by a decrease in respiratory function during sleep. Established in 1989, the CCHS Family Support Network consists of families in the United States, Canada, and across the world who have children with CCHS. The network seeks to promote ongoing medical research into the cause, course, and treatment of CCHS; promotes the continuing education of the medical community about CCHS and affected individuals' special needs; provides appropriate referrals; promotes patient advocacy; and provides members with a phone directory of affected families. The network also produces a regular newsletter and holds family conferences every few years.

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