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CCHS Family Network (Congenital Central Hypoventilation Syndrome)



Address

71 Maple Street
Oneonta, NY 13820 USA

Fax

6074314351

Email Address

vanderlaanm@hartwick.edu

Description

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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