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
