The CCHS Family Newsletter has been published three times a year since 1990.  It is organized and edited by Mary Vanderlaan, Network founder and CCHS Mom.  Families and physicians are encouraged to submit news, stories, etc. for inclusion in the NL.  The Newsletter focuses on providing information to CCHS families and medical professionals on: 1) news about medical research and technological developments in the treatment of the disorder; 2) news and stories from families coping with the home care of their “high-tech”, technology dependent children; 3) discussions among families or families and physicians on medical or home health care issues, and 4) news on Network education and outreach activities.

The newsletter has international distribution, serving about 300 families in North and South America, Europe, Israel, Australia, New Zealand and elsewhere.  The Newsletter also goes out to medical professionals caring for CCHS children.  It is funded primarily by donations from CCHS families and no subscription fees are charged to families it serves.  Families report the greatest value of the Newsletter to be that it reduces the incredible isolation and uncertainty about the future that inevitably accompanies the diagnoses of a rare and life-threatening disorder whose etiology remains unknown.

In conjunction with the newsletter, a “CCHS Family Directory” is published and regularly updated, facilitating routine communication among affected families in North America and around the world.

CCHS Medical References

CCHS Symptoms, Diagnosis and Genetic Findings

CCHS
Presentation, Diagnosis and Management

Phrenic Nerve
Pacing in CCHS

Epidemiologic Survey of 196 Patients With Congenital Central Hypoventilation Syndrome

Flying with a Ventilator in the USA

Independent Living Institute

PubMed

PHOX2B Mutation–Confirmed Congenital Central Hypoventilation Syndrome

Dermatoglyphics in CCHS

Congenital Central Hypoventilation Syndrome PHOX2B Mutations and Phenotype

Facial Phenotype in Children and Young Adults with PHOX2B–Determined Congenital Central Hypoventilation Syndrome: Quantitative Pattern of Dysmorphology

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French CCHS Family Network

Undine Syndrom — Selbsthilfegruppe

Japan CCHS

American Thoracic Society Statement on CCHS, 2010

Imaging brain function and structure in Congenital Central Hypoventilation Syndrome
Ronald M. Harper, Ph.D. Dept. of Neurobiology David Geffen School of Medicine at UCLA Los Angeles, CA 90095 USA

The Genetics of CCHS: What We Know Today
Elizabeth Berry-Kravis M.D Ph.D.
Rush University Medical Center Chicago

Facial Phenotype in Children and Young Adults with PHOX2B-Determined Congenital Central Hypoventilation Syndrome: Quantitative Pattern of Dysmorphology.

GeneReviews: Congenital Central Hypoventilation Syndrome