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CCHS Family Network

Last Update:4/1/2019
Contact:Melinda Riccitelli, Ph.D.
Title:Executive VP, CCHS Network
Address:71 Maple St
Oneonta, NY 13820
County:Out of state
Toll Free:
To encourage and support research; To support new CCHS families
Program Description

Provides information and support to families whose children have been diagnosed with Congenital Central Hyperventilation Syndrome. This is a lifelong condition, although the prognosis for a near-normal lifestyle is good.

CCHS is a rare neurological disorder characterized by a decrease in respiratory function during sleep or during both sleep and awake states. CCHS patients are vent dependent for sleep in particular.

We provide families with a national directory of other families for their use/consultation; a monitored discussion board for exchange and sharing of information and addressing of questions posed; an updated list of physicians in the US specializing in CCHS; and so on. We provide families secure pages for sharing discussion, pictures, the directory, past newsletters and so on. We also share literature on CCHS and other info for anyone interested in CCHS.

FaceBook We also have a Facebook page (closed group) for any family or patient with CCHS.  To join, go to FB closed groups list and click on CCHS Family Network.

Family Support
Genetic Disorders
Information & Referral
Neurological Disorders
On-line Community/Listserv/Social Media
Parent to Parent/Matching
Rare Disorders
Counties Serviced
7172 Graham Road, Suite 100, Indianapolis, IN 46250 E-Mail:

As a matter of policy, About Special Kids does not specifically endorse any of the resources contained on our website or in our information packets. Resources are supplied for information purposes only and ASK recommends that families explore all options for assistance before making an informed choice.