Cause Description:
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.
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