HEART FAILURE AND TRANSPLANTATION
Advanced Cardiac Therapies Improving Outcomes Network (ACTION)
A collaboration network of medical and healthcare professionals, patients, and families focused on the management of pediatric heart failure and ventricular assist devices. Site includes links to support groups and downloadable resources.
American Society of Transplantation
Provides a patient section with downloadable patient education brochures in English and Spanish.
Children's Organ Transplant Association
Helps children and young adults in need of a transplant by providing fundraising assistance and family support.
Works toward education and awareness of the need for organ donation. This site has a link to register to be an organ donor in the United States.
Funds research focused on extending post-transplant survival, improving quality of life for pediatric transplant recipients, and eliminating pediatric heart diseases that may lead to transplantation.
Help Hope Live
Offers direct financial assistance, fundraising guidance and support to families in need of a transplant.
International Pediatric Transplant Association
Professional medical organization dedicated to advancing the science and practice of pediatric transplantation and advocating for the rights of children who need transplantation.
Lane Thomas Foundation
Offers financial assistance to families with patients under 18 years of age who are listed or undergoing a transplant at designated hospitals in Omaha, Nebraska.
National Foundation for Transplants
Offers fundraising assistance for transplant candidates and recipients worldwide.
Pediatric Heart Transplant Society
A multidisciplinary professional organization dedicated to advancing the science and treatment of children before and after heart transplantation. Includes educational resources on pediatric heart failure for patients and families.
Provides inspiration, education and support resources for families living with or awaiting pediatric transplant.
Sponsored by UNOS, site provides patient information on before, during and after a transplant including a section on pediatric transplants.
Educational web site based at the University of Michigan serving the world transplant community. Features news, personal stories, references and a Q&A section.
United Network for Organ Sharing (UNOS)
UNOS’ mission is to improve the effectiveness of organ donation, procurement, distribution and transplantation. Includes patient section focused on waiting and living with a transplant.
United Network for Organ Sharing Organ Transplants: What Every Kid Needs to Know
This child friendly book provides general information on the transplantation process and aims to help children and families feel more at ease.
United Network for Organ Sharing Talking About Transplants: What Every Patient Needs to Know
Developed by UNOS parent advisors, this book covers topics related to transplantation, such as preparing for transplant, financial considerations, life after transplant, and promoting organ donation.
United Network for Organ Sharing Talking About Transplantation: What Every Parent Needs to Know
Developed by the U.S. Organ Procurement and Transplantation Network (OPTN) and United Network for Organ Sharing (UNOS) parent committees and staff, this book covers topics related to organ transplantation from a parent’s perspective before, during, and after the transplant.
U.S. Department of Health & Human Services: Organ Procurement and Transplantation Network
A collection of data that pertains to the patient waiting list, organ donation matching, and transplantation occurring on the OPTN, the nation's organ transplant network.