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Patient Advisory Committee (PAC) is a committee of congenital heart disease (CHD) patients and parents organized to assist the Adolescent Transitional Care director and staff in identifying programmatic needs for patients and families in order to develop patient support programs and resources.
Through the PAC committee specially trained peer support counselors are available to talk with patient(s) or family member(s) to offer support and information. If you are interested in learning more about our peer support program, please contact Mary Canobbio at [email protected].
Camp del Corazon is a non-profit organization that provides year-round activities for children growing up and living with heart disease. A residential summer camp program for children ages 7-17 is offered yearly. Other programs include that offer opportunities for growth, education and support fourteens, young adults and the families who are living with heart disease. Once a teen reaches 18, they can continue to participate in Camp activities through their PACE program.
The Heart Connection provides support, information and resources to families with children and teens with congenital heart defects. A series of special events, including online support groups, allows parents to exchange information and share emotional support.
The Congenital Heart Information Center (CHIN) – a web-based program that provides information for parents of children w/ CHD.
Adult Congenital Heart Association (ACHA) – a patient-driven membership program for adults with congenital heart disease. They provide education programs, are serve as an advocacy group for patients and their families.
American Heart Association. a not-for-profit, voluntary health organization funded by private contributions. Its mission is to reduce disability and death from cardiovascular diseases and stroke. Provides patient education materials on congenital heart disease. See Web Booklet- Adults with Congenital Heart Disease.
American College of Cardiology. Cardiosmart : Congenital Heart Disease.