Patient and Family Education

• The Children’s Organ Transplant Association (COTA) provides fundraising assistance for children and young adults needing lifesaving transplants and promotes organ, marrow and tissue donation. Information on how to become a COTA family is included.
• Coping With Organ Transplant: A Practical Guide, by Elizabeth Parr and Janet Mize, is a guide to transplant from an organ recipient and a transplant nurse coordinator.
• LifeCenter Northwest, an organ-procurement organization, has information about organ donation, how residents of Washington, Alaska, Montana and Idaho can become organ donors.
• The National Child Traumatic Stress Network helps to improve access to services for families who may have undergone traumatic experiences and are seeking support.
• The Organ Procurement and Transplantation Network (OPTN), the transplant network established by the United States Congress, links together all of the professionals involved in the donation and transplant system. The United Network for Organ Sharing (UNOS) oversees the OPTN.
• Organ Transplants: Making the Most of Your Gift of Life, by Robert Finn, is a guide to organ transplants: what to consider, the system and the wait, different types of transplants (heart, lung, liver, kidney, intestine, pancreas and others), anti-rejection drugs, living donors, donors and recipients, traveling for treatment and a glimpse into the future of transplants.
• The Scientific Registry of Transplant Recipients provides data about donor organs and all solid-organ transplants performed in the United States.
• Transplant Living is a project of UNOS. The site has extensive information for patients, including news and a description of what happens during a transplant.
• Transplants: Unwrapping the Second Gift of Life, by Pat Stave Helmberger, is the inside story of transplants as told by recipients, their families, donor families and health professionals.
• The United Network for Organ Sharing (UNOS), established by Congress, is a nonprofit scientific and educational organization that matches organs with recipients and collects and manages data about every transplant occurring in the United States. The site offers extensive data on transplants, including information from every hospital that performs a transplant.
• Watch videos on our Transplant Playlist, sharing stories of life-saving transplants at Seattle Children’s.

• The American Association of Kidney Patients helps kidney patients and their families deal with the physical, emotional and social impact of kidney disease. The site has resources for dialysis and transplant patients, as well as information about public programs that help kidney patients meet their financial and personal needs.
• The American Kidney Fund provides direct financial assistance to kidney patients in need, and education for people who have kidney disease or are at risk for it.
• The American Society of Pediatric Nephrology provides many fact sheets plus resources for parents of children who have chronic kidney disease. The site has many links, including websites for general and disease-specific information, email discussion groups, kidney (renal) transplant information and information about transitioning to adulthood and adult specialty care.
• The Inside Story: A Kid’s Guide to Kidney and Liver Transplants, by Karen Crowe, is a book written to educate kids on what to expect before and after surgery. There are many books available for you to borrow from the Family Resource Center at Seattle Children’s, or you can find titles at your local library or bookstore.
• The National Institute of Diabetes and Digestive and Kidney Diseases, part of the National Institutes of Health, has information about kidney diseases, including resources about kidney disease in children and current clinical trials that are recruiting patients.
• The National Kidney Foundation provides information about transplant and kidney diseases.

• The American Liver Foundation website features information about liver diseases, treatment, research and patient stories.
• The Children’s Liver Association for Support Services (CLASS) provides information, support and services to families coping with pediatric liver disease and transplant. The site has a library with descriptions of liver diseases and treatments, including biliary atresia and cirrhosis.
• The Inside Story: A Kid’s Guide to Kidney and Liver Transplants, by Karen Crowe, is a book written to educate kids on what to expect before and after surgery. There are many books available for you to borrow from the Family Resource Center at Seattle Children’s, or you can find titles at your local library or bookstore. 
• The Living Donor Advocacy Toolkit for Liver Transplant Candidates (Spanish) provides information to support people who want to advocate for a patient who is waiting for a liver transplant.

The following are presentations from the 2017 Studies in Pediatric Liver Transplant Family Education Day: 

• Organ Donation Advocacy and Anna’s Bill by Gracie Parish (PDF)
• Studies in Pediatric Liver Transplantation: A 25 Year Journey by John Bucuvalas (PDF)
• Immunizations: Guidelines and Practices for Live Vaccines by Thor Wagner, MD (PDF)
• Global Outcomes in Pediatric Liver Transplantation by Vicky Lee Ng, MD FRCPC (PDF)

• Heart Transplant Handbook: What to Know Before a Heart Transplant (PDF) (Spanish)
• Heart Transplant Handbook: What to Know After a Heart Transplant (PDF) (Spanish)
• The Children’s Cardiomyopathy Foundation is a national nonprofit organization that exists to promote and fund research into the cause and cure for pediatric cardiomyopathy, a disease in which the heart muscle loses the ability to pump blood effectively because it is abnormally enlarged, thickened or stiffened.
• The Pediatric Heart Transplants: A Guide for Families (Spanish) from the Pediatric Heart Transplant Society Foundation is designed to provide helpful information about heart transplants in children for parents and family members.

• The Intestinal Transplant Registry tracks outcomes of all of the intestine transplants done around the world and provides information about risks and benefits of this surgery.