Resources

Links, phone numbers and books for those who have loved ones who are terminally ill.

December 19, 2004

Initiative for Pediatric Palliative Care
A non-profit partnership working to enhance care for children with life-threatening conditions through education and research, including a seven-hospital pilot project and training of caregivers around the country. Phone: 617-618-2822

Children's Hospice International
A non-profit advocacy, support and education group and lead agency working with several states on developing new models of care for critically ill children. Phone: 1-800-2-4-CHILD

National Institute of Nursing Research
The lead institute for end-of-life research within the National Institutes of Health. NINR is sponsoring a research initiative in end-of-life care for children.

When Children Die
The National Institute of Medicine's 2002 report on the problems in end-of-life care and recommendations to do better.

Ronald McDonald House of Baltimore
A home away from home for seriously ill children, who are undergoing treatment at a Baltimore hospital, and their families. Phone: 410-528-1010

The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins
A guide to pediatric oncology services at Hopkins.

Resources for seriously ill children:

The Starbright Foundation
A non-profit group led by Steven Spielberg that creates projects to help children cope medically and emotionally with illness. Uses entertainment, relaxation and other techniques to help kids prepare for procedures. Includes Web-based program that allow sick kids to connect with peers in other hospitals. Phone: 310-479-1212

Brave Kids
Support, message groups, games and other help for children with chronic, serious or life-threatening illnesses or disabilities.

For Parents:

Harriet Lane Compassionate Care, Johns Hopkins Children's Center
Support and services for critically ill children at Hopkins, also grief and bereavement help. Phone: 410-955-0055.