General Pediatric Brain Tumor Sites
The Brain Tumor Foundation for Children
An organization that has a Children's Cancer Symposium called Tools for Living. Provide information and a news letter.
Review 6/06
Childhood Brain Tumor Foundation
Site with many articles and several newsletters online. One of the services includes the Childhood Cancer Ombudsman Program which helps with health insurance analysis and applications, employment and educational difficulties that may arise during or after treatment.
Review 6/06
Children's Brain Tumor Foundation
Information and resources for parents of brain tumor kids including school issues, medical overview, going home and getting help.
Review 6/06
Pediatric Brian Tumor Foundation of the US
One of the best parts of this site is The Informed Parent Internet Series. There are 4 lectures a year that are given through the internet that deal with various topics. All lectures are available through the archives. Topics to date include: Growth and Development-Endocrine Issues, Post Traumatic Stress, Helping Siblings Cope, Healing the Family, School Re-entry, Clinical Trial, The Importance of a Multidisciplinary Approach.
Review 6/06
We Can
A pediatric brain tumor group for parents in the Los Angeles area.
Review 6/06
Childhood Brian and Spinal Cord Tumors: A Guide for Families, Friends and Caregivers
This site talks about Nancy Keene and all the books she has written for parents- excellent combination of information and parent stories-over 500 pages.
Review 6/06
The North American Brain Tumor Coalition
The North American Brain Tumor Coalition is a network of charitable brain tumor organization from the United States and Canada that have come together with the mission of eliminating brain tumors. The organization is geared towards adults and/or pediatrics and offers research, education, and support services to brain tumor parents, families and friends. The Coalition aims to raise public awareness about the impact of brain tumors and advocated for increased funding for research as well as access to care issues and other concerns facing brain tumor patients. One of the main events of these organizations is the agenda for the Brain Tumor Awareness Week usually held in May.
This website has an interesting fact page, faces of brain tumors, and related legislative issues.
General Brain Tumor Sites
American Brain Tumor Association
The ABTA has a large site for information, support and research updates. There is a specific area for kids. There is on on-line primer about brain tumors. Alex's Journey, a video for kids, can also be obtained.
Review 6/06
Brain Tumor Foundation of Canada
The best thing about this site is an 138 on-line pediatric book that is extremely extensive. There is a newsletter and support information.
Review 6/06
The Brain Tumor Society
The Brain Tumor Society provides resources for patients, survivors, family, friends and professionals.
Review 6/06
T.H.E. Brain Trust
A site for support and information. There is an excellent book list and several listserves.
Review 6/06
The Central Brain Tumor Registry of the United States
A not-for-profit corporation established to provide a resource for descriptive statistical data on all primary brain tumors.
Review 6/06
Musella Foundation For Brain Tumor Research and Information
This is an extensive site with tons of information on everything about brain tumors. The home page has information for new users. One can get an email address, find clinical trials, enter chat rooms, make a memorial and much more. At one of the pages (http://www.virtualtrials.com/link.cfm) there are 394 links related to brain tumors.
Review 6/06
National Brain Tumor Foundation
NBTF is a national non-profit health organization dedicated to providing information and support for brain tumor patients, family members, and healthcare professionals, while supporting innovative research into better treatment options and a cure for brain tumors.
Review 6/06
Southeastern Brain Tumor Foundation
A regional organization for brain tumor awareness.
Review 6/06
South Florida Brain Tumor Association
An organization that began in 1990 by a patient survivor. This organization holds several conferences per year which does address some pediatric issues.
Review 6/06
Brain Tumors: Leaving The Garden Of Eden
This 'intro' survivor's guide contains basic facts about your brain tumor, getting organized, surfing the Internet, your Team, finding an Expert, getting a second opinion, contacts for major Brain Tumor Centers world-wide, steroids (decadron), diagnosis and treatment...and more written by a doctor. (A book available now).
Review 6/06
