Resources for Families
Referral Nurse Navigators
The Cardiac Center's Referral Nurse Navigators are exclusively dedicated to helping all referring physicians, and new patients and their families, connect with the Cardiac Center at CHOP.
Family conference at CHOP
Heart and Mind Education Day - An annual family conference held by the Cardiac Center for families of children with congenital heart disease. Parents and other family members come to hear talks from leading CHOP physicians and nurses, participate in panel discussions with families and older patients, and catch up with members of the Cardiac Center team who have cared for their children.
National advocacy organizations
- American Heart Association - Aims to build healthier lives, free of cardiovascular diseases and stroke.
- American Lung Association - Works to save lives by improving lung health and preventing lung disease through education, advocacy and research.
- American Organ Transplant Association - Helps patients lead happy, productive lives by helping them to obtain and sustain transplantation.
- American Society for Transplantation - Dedicated to improving human life by advancing the field of transplantation.
- Big Hearts to Little Hearts - Committed to supporting research and care for pediatric cardiac patients.
- CHARGE Syndrome Foundation - Provides support to individuals with CHARGE syndrome and their families.
- Children's Cardiomyopathy Foundation - Dedicated to accelerating the search for cures while improving diagnosis, treatment and quality of life for children affected by cardiomyopathy.
- Children’s Heart Foundation - Funds the most promising research to advance the diagnosis, treatment and prevention of congenital heart defects.
- Children's Organ Transplant Association - Helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support.
- Congenital Heart Information Network - Provides reliable information, advocacy, support services, financial assistance and resources to people affected by congenital heart defects.
- Donate Life America - Committed to increasing organ, eye and tissue donation.
- National Foundation for Transplants - Offers fundraising assistance for organ and tissue transplant patients across the country.
- Transplant Recipients International Organization, Inc. - Committed to improving the quality of life of transplant candidates, recipients, their families and the families of organ and tissue donors.
- The United Network for Organ Sharing (UNOS) - Manages the nation's organ transplant system under contract with the federal government.
Parent support groups
- Little Hearts, Inc. - Provides support, education, resources, networking and hope to families affected by congenital heart defects.
- Pulmonary Hypertension Association - Aims to provide hope for the pulmonary hypertension community through support, education, advocacy and awareness.
- Sisters by Heart - Parent support group for families of children with hypoplastic left heart syndrome.