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Pediatric / Childhood Cancers Resources
The purpose of this information guide is to help parents of children newly diagnosed with brain tumors to
find sources of information and support. This list is not meant to be comprehensive, but rather to provide
starting points for information seeking. The materials can be found at the Patient Education Resource Center
(PERC) of the University of Michigan Comprehensive Cancer Center in room B1-361.
Print-friendly version of this guide
Last updated 11/2007
Published by the Brain Tumor Society [
note: the following links open as .pdf documents]:
National Cancer Institute. What You Need to Know about Brain Tumors.
A printable version is available through the National Cancer Institute's website.
Pediatric Brain Tumor Foundation of the United States.
- Basic Facts About Pediatric Brain and Spinal Cord Tumors
- Basic Facts About Medulloblastoma/PNET
- Basic Facts About Juvenile Pilocytic Astrocytoma
- Basic Facts About Astrocytoma
- Basic Facts about Ependymoma
- Questions For Your Medical Care Team When Your Child Has a Brain Tumor
Printable versions of these publications are available from the Pediatric Brain Tumor Foundation of the United States
web site.
Wood, Debra. "Into the Brain: Unlocking New Brain Cancer Treatments".
Cure; Vol. 3, No. 1,
Spring 2004 (p.23).
Children's Brain Tumor Foundation.
A Resource Guide for Parents of Children with Brain Or Spinal Cord Tumors.
4th ed. New York, NY: Children's Brain Tumor Foundation, 2006. Order a free copy e-mail the Children's Brain Tumor Foundation at:
tmoore@cbtf.org.
Segal, Gail, and American Brain Tumor Association. Dictionary for Brain Tumor Patients. Des Plains, IL:
American Brain Tumor Association, 2002. A printable version is available online at the American Brain Tumor Association
web site.
American Brain Tumor Association. Primer of Brain Tumors:
A Patient's Reference Manual. 8th ed. Des Plains, Il: American Brain Tumor Association, 2004.
A printable version is available online at the American Brain Tumor Association
web site.
Shiminski-Maher, Tania. Childhood Brain and Spinal Cord Tumors: a Guide for Families, Friends &
Caregivers. Sebastopol, CA: O'Reilly & Associates, Inc, 2002.
Stark-Vance, Virginia. 100 Questions & Answers about Brain Tumors. Sudbury, MA: Jones and Bartlett,
2004.
Zeltzer, Paul M. Brain Tumors: Finding the Ark: Meeting the Challenges of Treatment Choices, Side effects,
Children's Unique Needs, Healthcare Costs & Long Term Adjustment. Encino, Cal: Shilysca Press, 2006.
American Brain Tumor Association
An extensive site includes tumor specific information as well as a dictionary and information on living with
coping with a brain tumor. Has a section for children and siblings.
The Brain Tumor Society online
The Patients Resources section included detailed medical information including pathology, nutrition and lay-language
summaries of published professional articles. This site also includes Information about support services for
patients and families and downloadable files of brochures and fact sheets published by the Brain Tumor Society.
Clinical Trials and Noteworthy Treatments for Brain Tumors
This site has a comprehensive database of brain tumor clinical trials, articles, and directories of hospitals and
physicians.
Childhood Brain Tumor Foundation
Includes a collection of articles on various aspects of brain tumors in children.
Children's Brain Tumor Foundation
A Medical overview and information on supporting the child with a brain tumor in the hospital, school, and home.
A detailed section on various organizations offering patient support services for pediatric brain tumor patients
and families.
National Brain Tumor Foundation
This site offers information on specific tumor types, treatment, rehabilitation and coping
with adult and childhood brain tumors.
BRAINTMR -- This listserv discusses all adult and
pediatric brain tumors. This page also provides access to listservs focusing of specific types of
childhood brain tumors.
Childhood Brain Tumor Foundation
Phone: 301-515-2900
Children's Brain Tumor Foundation
Phone: 212-367-9000
American Brain Tumor Association
Phone: 847-827-9910
Fax: 847-827-8000 or 847-886-2282
The Brain Tumor Society
Phone: 800-770-8287
Fax 617-924-9998
Pediatric Brain Tumor Foundation of the United States
Phone: 800-253-6530
Fax: 828-665-6894
This list does not constitute an endorsement of the information contained in the resources.
It is provided for educational purposes only and are not intended for nor engaged in rendering
medical advice or professional services. The information provided through this list and its links
should not be used for diagnosing or treating a health problem or a disease. It is not a substitute
for professional care.
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