CCHS Network | Casting a Light in the Dark

Casting a Light In the Dark

Congenital Central Hypoventilation Syndrome (CCHS)
is an extremely rare disorder that affects the body’s ability to control basic functions, such as breathing during sleep. There are no available treatments to date beyond mechanical ventilation. The CCHS Network is casting a light on this orphan disease to ensure a brighter future for our small but determined community.

Who

CCHS affects less than 2000 individuals worldwide & is considered one of the rarest medical conditions (also known as an “orphan disease”).

CCHS occurs equally in males and females and presents similarly across all ethnicities and races.

What

CCHS is a lifelong and life-threatening genetic disorder with the hallmark symptom of impaired breathing primarily during sleep.

CCHS affects the autonomic nervous system which controls many self-regulating functions of the body, including heart rate, blood pressure, temperature stability, sensing of oxygen and carbon dioxide levels, bowel motility, and more.

When

Symptoms of CCHS typically present at birth though extremely mild cases may not be detected for weeks, months, or even years.

Provider expertise, sleep studies and genetic testing allow for timely diagnosis and treatment.

Where

The CCHS Network is a recognized 501(C)(3) tax-exempt, non-profit organization based in the United States serving both the US and International CCHS community at large.

The CCHS Network represents the largest association of patients and families across the globe.

Why

The CCHS Network works to strengthen patient & professional communities, provide education & advocacy, and support CCHS research to improve and expand treatment options.

The ultimate goal is to bear witness to the development of drugs and other therapies that will ease the burdens of CCHS.

Our Mission

Building Community, Empowering Patients, Championing Research

The CCHS Network has a multi-focused mission of education and support of our families and CCHS patients, inter-family and family-physician communication, and supporting and facilitating CCHS research.

Our Message

Meet patients, families and supporters as they share their experiences with CCHS and personalize our call to action. Share these links and help spread the word about our orphan disease.

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Our vision is a future where CCHS is no longer a
life-threatening diagnosis!

Our Impact

Our Stories

Each person’s journey with CCHS is unique. Read about individual challenges and triumphs and be inspired by our brave, determined, and resilient community!