CCHS Network (Congenital Central Hypoventilation Syndrome)
About CCHS Network (Congenital Central Hypoventilation Syndrome)
The CCHS Family Network was founded in 1989 by Mary Vanderlaan following the birth of her CCHS son to increase awareness about this rare disease and provide education and support to CCHS families and patients. We are a non-profit, tax-exempt organization registered in the United States. The CCHS Network promotes communication across physician/patient communities in the US and around the world, while our CCHS Foundation and Research Advisory Board focus upon funding and facilitating critical CCHS research in the US and abroad. The CCHS Network is managed by a team of volunteers who all have children with CCHS. Their mission is to support CCHS patients and families in the pursuit of medical stability and empowerment, foster education and advocacy across CCHS medical and lay communities, and mobilize global resources to drive research for improved treatments and ultimately a cure for CCHS. We aim to inform families about resources and research without prejudice or predisposition toward any particular provider, technology, treatment strategy, research team or medical practitioner.