CCHS Network Inc.

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.

Casting a Light in the Dark

The CCHS Network, Inc. (The Network) was established in 1989 as a nonprofit 501(c)(3) to unite families confronted with this rare and life-altering diagnosis, who at the time had no organized source of support. Families from across the United States and around the world joined together to form a community grounded in compassion, shared knowledge, and hope. This dedicated group laid the foundation for what would become the leading organization serving the CCHS community. Today, it is estimated that 3,000–5,000 individuals worldwide live with CCHS, with more individuals being identified as awareness and diagnostic testing improve. The Network has registered approximately 1,300 patient families, establishing it as the largest and longest-standing CCHS patient organization in existence.

The CCHS Network is committed to evolving as an organization with a reputation for providing (1) support to families and the patients affected by a CCHS diagnosis, (2) platforms to discuss issues and distribute useful information (3) ways to increase the awareness within and beyond those affected by or working towards understanding the disease, and ideally towards a cure, (4) resources and funding to the family community, researchers, and medical community, and (5) organizing conferences to educate, connect, and inspire.

The CCHS Network is proud to have hosted 9 life-altering family conferences for those living with CCHS, sponsored and organized 6 scientific conferences to bring together clinicians, healthcare workers, and scientists, and funded ~ $1.5MM in research and $60,000 in patient support programs. In addition, we established the annual International CCHS Day, created by our team to unite the global community in raising awareness and funds, while celebrating those living with CCHS bravely, resiliently, and with determination. What began as an initiative of The Network has since mobilized individuals, families, and organizations worldwide, amplifying the voice of the CCHS community and shining a light on the strength and courage of those affected.