Children's Cardiomyopathy Foundation, Inc. Overview
Programs: As the first national group focused specifically on pediatric cardiomyopathy, CCF is involved in all aspects of the disease from research and education to patient support, awareness and advocacy.
CCF's work involves
* Catalyzing research and promoting education
* Advancing treatment models
* Providing leadership and advocacy in the pediatric community
* Offering child and family assistance
More than $1.5 million has been committed to research and treatment initiatives, and CCF has led the way in establishing a biologic specimen repository and planning the first international scientific conference. In the process, CCF has partnered with the National Heart, Lung and Blood Institute, American Heart Association, National Society of Genetic Counselors and the National Organization for Rare Diseases. CCF continues to be an invaluable lifeline to affected families providing information, resources and guidance. CCF’s educational materials are now distributed to more than 70 hospitals in North America.