Transplants for Children with Disabilities: Information for Parents

January 27, 2012

  http://rwjms.umdnj.edu/boggscenter/products/documents/TransplantPampletFINAL6-11.pdf

"Before 1990, an intellectual disability prevented a person from receiving an organ transplant. Today, according to statistics from the Scientific Registry of Transplant Recipients, many children with intellectual disabilities are on the United Network for Organ Sharing (UNOS) waiting list and receiving transplants, and the survival rates are comparable to the general population."

Developed by the Elizabeth M. Boggs Center on Developmental Disabilities at the UMDNJ Robert Wood Johnson Medical School, this pamphlet contains information for families of children with disabilities on organ transplants.

Contents:

• Organ Transplants for People with Disabilities
• How to Advocate for your Child
• Important Things to Know about Transplantion
• How to Talk to Your Child about Transplant
• Medication and Diet
• Tools to Detect When Your Child is in Pain
• Family and Self-Care
• School Programs
• The Federal Law
• Useful Websites