Patients & Families

Review treatments and transitions informed from the 2010 ATS Statement.

Treatments


Research

We are committed to investigational studies, best clinical practices, and best patient-centered outcomes.

Projects


Donors

CCHS Foundation is the fundraising subsidiary of the CCHS Network.

About Us

CCHS Foundation has raised $102,055.8 toward our annual goal of $150,000. Your generosity makes a difference!

In 2017, through the generous donations made by the CCHS Community, the CCHS Foundation raised $183,106.99. This money will go to support CCHS research and causes. Thank You!

Make a Donation



featured-video

Featured Video

“CCHS” by Jeff Martini on Vimeo

CCHS is a rare genetic disorder of the central nervous system affecting ~1200 individuals worldwide. It impairs the body’s ability to breathe automatically, especially during sleep.
Those with CCHS are also at risk for cardiac pauses, cancer, GI dysfunction, seizures, and learning and behavioral issues.

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featured-video

Featured Video

2018 CCHS Conference Highlights

The 2018 CCHS Conference was well attended by CCHS Families, medical professionals, researchers, and device manufacturers from 19 different countries, as far away as Japan, Israel and Russia, many from Europe, and some from Latin America.

Medical professionals and researchers shared data and information about CCHS research and/or studies on CCHS patients. Presentations highlighted the progress made in understanding the etiology and molecular mechanisms of phox2b. CCHS families and patients shared best care practices and successful living independent guidelines, renewed old acquaintances and made new friends. Collaboration, teamwork, and cooperation was the overriding theme of the conference: whether in research, fundraising, clinical practices, or patient-care sharing, working together fosters community and moves us forward!

#MovingTowardsACure

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2018 Conference: Video Gallery

Posted Tuesday, September 25, 2018 by ryan_cchs

2018 Conference: Video Gallery

CCHS Day 2018

Posted Wednesday, October 4, 2017 by ryan_cchs

CCHS Day 2018

In The News: 2017 Grant Awards

Posted Wednesday, August 2, 2017 by ryan_cchs

In The News: 2017 Grant Awards



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