CCHS Network One World Registry

We are pleased to announce the launch of CCHS Network One World Registry. The CCHS Network One World Registry creates a platform for patients around the world to strengthen their voices and share information about Congenital Central Hypoventilation Syndrome, a disease that causes autonomic nervous system dysfunction which controls many self-regulating functions of the body. This includes heart rate, blood pressure, sensing of oxygen and carbon dioxide levels, temperature control, bowel and bladder habits, and more. Congenital Central Hypoventilation Syndrome currently has no cure. Designed with the input of scientists and patients, this global resource will provide data for researchers to use to advance drug development and treatment options to help improve Congenital Central Hypoventilation Syndrome patient care. Join now and let your data tell your story! www.cchsnowregistry.iamrare.org.

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