Seattle Children's Hospital wants you to have all the information you need to understand your child's kidney disorder.
- 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. In 2004, the fund served more than 55,000 low-income kidney patients, distributing more than 100,000 grants totaling $57 million.
- 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, renal transplant information and information about transitioning to adulthood and adult specialty care.
- The National Kidney Foundation provides information about transplant and kidney diseases and a whole section dedicated to parents and children.
- The National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC) is an information dissemination service connected to the National Institutes of Health, a program under the U.S. Department of Health and Human Services. The site has information about current clinical trials that are recruiting patients, as well as statistics and information about kidney diseases.
- Transplant Experience is a program that can help you get the most out of each day and help you be ready for what's ahead.
There are many books available for you to borrow from the Family Resource Center at Seattle Children's, or you can find these titles at your local library or bookstore.
The Inside Story: A Kid's Guide to Kidney and Liver Transplants, by Karen Crowe, is written to educate kids on what to expect before and after surgery.