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The purpose of this information guide is to help parents of newly diagnosed children with Retinoblastoma 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.
Last update 11/07
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Leukemia & Lymphoma Society.
"Learning and Living with Cancer" - note: opens as a .pdf document.
National Cancer Institute. "Young People With
Cancer: A Handbook for Parents".
Carroll, William L., and Jessica B. Reisman.
100 Questions & Answers about Your Child's Cancer.
Sudbury, MA: Jones and Bartlett Publishers, 2005.
Janes-Hodder, Honna & Keene, Nancy. Childhood Cancer: A Parent's Guide to Solid Tumor Cancers. 2nd.
Edition. Sebastopol, CA: O'Reilly, 2002.
Parker, Robert.; Trezza, Debra. Understanding childhood cancers. Jackson, MS: University Press of
Mississippi, 2007.
Woznick, Leigh A., and Carol D. Goodheart. Living with Childhood Cancer: A Practical Guide to Help Parents Cope.
1st ed. Washington, DC: American Psychological Association, 2002.
American Cancer Society
All about Retinoblastoma Cancer:
- Go to the American Cancer Society site
(NOTE: this link will open in a second browser window for your convenience):
- Under "Choose a cancer type or topic" select "Retinoblastoma" (An Eye Cancer) and click "Go"
- Click on: "All About Retinoblastoma" (an eye cancer)
CureSearch
Information on Retinoblastoma for children and parents is available on this site.
Eye Cancer Network
- Click on "Patient Info" and select "Retinoblastoma" from the list of conditions
An overview of the genetics and treatment of retinoblastoma. The site features color illustrations,
articles about various treatments, frequently asked questions and an international physician list.
National Cancer Institute Retinoblastoma page
- Go to the National
Cancer Institute site
(NOTE: this link
will open in a second browser window for your convenience):
- Under "All Cancer Types" click on "A to Z list of Cancers"
- Select "Retinoblastoma"
People Living With Cancer. Retinoblastoma, Childhood
- Go to the People Living With Cancer site at: www.plwc.org
(NOTE: this link
will open in a second browser window for your convenience):
- Under "PLWC Guides to Cancer" Select: "Retinoblastoma, Childhood"
Retinoblastoma.com
The most useful section of the site is a Parent's Guide to Understanding Retinoblastoma.
This is a detailed overview with color illustrations that includes an explanation of the eye’s anatomy,
genetics of retinoblastoma, treatment and long term consequences of the illness.
R-BLASTOMA is an
email discussion group dedicated to Retinoblastoma.
Ped-Onc is an email discussion group for all
types of pediatric cancers.
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.
Candlelighters -
www.candlelighters.org
Phone: 800-366-2223
The National Children's Cancer Society -
http://nationalchildrenscancersociety.com
Phone: 800-5-FAMILY (800-532-6459)
Retinoblastoma International - www.retinoblastoma.net
Phone: 323-669-2299
This document is not intended to take the place of the care and attention of your personal physician or other professional medical services.
Our aim is to promote active participation in your care and treatment
by providing information and education.
Questions about individual health concerns or specific treatment options should be discussed with your physician.
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