Resources for Families
National advocacy organizations
- American Heart Association - Aims to build healthier lives, free of cardiovascular diseases and stroke.
- American Lung Association - Working to save lives by improving lung health and preventing lung disease through education, advocacy and research.
- American Organ Transplant Association - Helping 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.
- Cardiac Arrhythmias Research and Education Foundation - Formulates, promotes and leads initiatives to prevent sudden cardiac death due to acquired and heritable heart rhythm.
- 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.
- Coalition on Donation - Committed to increasing organ, eye and tissue donation.
- Congenital Heart Information Network - Provides reliable information, advocacy, support services, financial assistance and resources to people affected by congenital heart defects.
- 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.
Resources
- National Heart Lung and Blood Institute - Condition Index - Provides science-based, easy-to-understand information related to heart, lung and blood diseases and conditions, and sleep disorders.
- The U.S. Department of Health and Human Services' Donation Initiative - U.S. Government information on organ and tissue donation and transplantation.
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.
Contact Us
For a second opinion, cardiac referral, or for more information.
267-426-9600
To schedule an outpatient appointment.
215-590-4040