Resources
When a child is diagnosed with congenital heart defect/disease (CHD), no matter if it is during pregnancy or after the birth, it can be earth-shattering. Being a parent or caregiver for a Heart Child can be difficult for the entire family. Through our programs, we strive to make your Heart Journey a bit more comfortable. We hope that these resources can help you navigate the CHD world & caring for a Heart Warrior.
General CHD Support
Nemours KidsHealth is the most-viewed site for dependable information on children's health, behavior, and development from before birth through the teen years.
Request a “visit” from a trained volunteer who can listen and give support because they are patients, parents, and caregivers themselves. We know that these connections can make all the difference.
CHD in
Children (CHOP)
Children's Hospital of Philadelphia (CHOP) is the nation's first hospital devoted exclusively to the care of children. Built on a foundation of delivering safe, high-quality, family-centered care, the Hospital has fostered medical discoveries and innovations that have improved pediatric healthcare and saved countless children’s lives.
CDC is the nation’s leading science-based, data-driven, service organization that protects the public’s health. For more than 70 years, the CHC has put science into action to help children stay healthy so they can grow and learn; to help families, businesses, and communities fight disease and stay strong; and to protect the public’s health.
Mayo Clinic is a nonprofit organization committed to clinical practice, education and research, providing expert, whole-person care to everyone who needs healing.
Sibling Support
Founded in 1990, the Sibling Support Project is a national program dedicated to the life-long and ever-changing concerns of millions of brothers and sisters of people with special developmental, health, and mental health needs.
Comfort Zone Camp is a nonprofit 501(c)3 bereavement organization that transforms the lives of children who have experienced the death of a parent, sibling, primary caregiver, or significant person. Their programs are free of charge and include trust-building activities and age-based support groups that break the emotional isolation grief often brings. Comfort Zone’s programs are offered to children ages 7-17, and their families for the family programs, plus they offer young adult programs for 18-25 year-olds.
Family Support
PhRMA’s Medicine Assistance Tool (MAT) is a search engine designed to help patients, caregivers and health care providers learn more about the resources available through the various biopharmaceutical industry programs.
RxHope is exactly what its name implies...a helping hand to people in need in obtaining critical medications that they would normally have trouble affording. Rx Hope acts as your advocate in making the patient assistance program journey easier and faster by supplying vital information and help.
Your genome contains many important clues about you—from your ancestry to the way your body responds to diseases, medications, and aging. Find out how the rapidly emerging field of genomics is transforming our understanding of human health and enabling advances that benefit all of humankind.
CDC is the nation’s leading science-based, data-driven, service organization that protects the public’s health. For more than 70 years, the CHC has put science into action to help children stay healthy so they can grow and learn; to help families, businesses, and communities fight disease and stay strong; and to protect the public’s health.
Mayo Clinic is a nonprofit organization committed to clinical practice, education and research, providing expert, whole-person care to everyone who needs healing.