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New booklet advises parents of pediatric transplant patients

New booklet advises parents of pediatric transplant patients

A new resource booklet, “What Every Parent Needs to Know,” is available for parents and caregivers of children and adolescents who need or receive an organ transplant. The OPTN/UNOS Patient Affairs Committee spearheaded the booklet’s development in collaboration with a number of transplant professionals and parents of organ transplant recipients*.

The booklet explains the transplant process from a parent’s viewpoint. It addresses issues before and during a transplant such as financial concerns and explaining deceased donation to a child, as well as guidance on helping children manage life after a transplant. It addresses a number of concepts and terms relating to transplantation and provides references to other helpful resources.

* The Patient Affairs Committee also wishes to thank the following organizations for reviewing the booklet:

  • American Liver Foundation
  • American Society of Transplantation
  • Anne & Robert H. Lurie Children’s Hospital of Chicago
  • Children’s Cardiomyopathy Foundation
  • Children’s Organ Transplant Association
  • International Pediatric Transplant Association
  • National Kidney Foundation
  • Pediatric Heart Transplant Study
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