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Has a national network of employees and volunteers who implement research, education, and patient service programs. Although programs differ according to state and province, some widely available programs are patient-to-patient visitation, transportation to appointments, housing near treatment centers, equipment and supplies, support groups, literature on a large variety of topics, summer camps for children with cancer, research and educational programs.
National Cancer Institute
*NCI's LiveHelp Service
Offers cancer-related information for the patients and health professionals, comprehensive descriptions of NCI research programs and clinical trials. The National Cancer Institute (NCI) is a component of the National Institutes of Health (NIH), one of eight agencies that compose the Public Health Service (PHS) in the Department of Health and Human Services (DHHS). The NCI, established under the National Cancer Institute Act of 1937, is the Federal Government's principal agency for cancer research and training.
Founded in 1970, Candlelighters has more than 40,000 members worldwide. Some of the free services provided by Candlelighters are a yearly bibliography and resource guide, quarterly newsletter, and various handbooks to help families of children with cancer.
This free service helps children with cancer and their families who are experiencing difficulties in gaining access to appropriate education, medical care, healthcare cost coverage, and meaningful employment. Services include medical library searches, a second opinion program, and help resolving problems with insurance or discrimination. You may contact the CCOP directly or
ask your nurse, social worker, or physician to contact them.
Childhood Cancer Ombudsman Program
P.O. Box 595
Burgess, VA 22432
Fax: (804) 580-2502
The National Children's Cancer Society helps children with cancer and their families by providing financial assistance, advocacy, education, and emotional support.
314.241.1600 (telephone) or 1-800-FAMILY
"Our mission is to provide financial support to families that have a child with cancer and the costs of the cancer treatments are causing financial difficulties. If your family is having financial difficulties do to a cancer illness, we maybe able to help. We can run special fundraising programs for you and try to raise money to help you."
The Patient Advocacy Committee, an integral part of the Children's Oncology Group, will work to enhance communication and increase understanding between childhood cancer patients, their families and the research community. Our mandate is to aid in the development of scientific programs that advance our ability to prevent and cure childhood cancer while responding to the medical, social and personal effects of cancer treatment. You may contact the COG-PAC via the COG Operations Office:
Missy Layfield - Patient Advocacy Committee
Children's Oncology Group
P.O. Box 60012
Arcadia CA 91066-6012
Starlight Starbright helps seriously ill children and their families cope with their pain, fear and isolation through entertainment, education and family activities. Not cancer-specific. Good sections for teens.
Chai Lifeline believes that seriously ill children (including children with cancer) need and deserve as happy and normal a childhood as possible. Their programs include: Camp Simcha, professional case management, learning programs, family retreats, insurance support service, wish granting, sibling support, and community services such as volunteer training. Families are invited to contact Chai Lifeline at 1 877 CHAI LIFE or email email@example.com for more information.
The Emmanuel Cancer Foundation (ECF) helps New Jersey families cope with the emotional, material and, in some cases, financial burdens that arise when struggling with a diagnosis of pediatric cancer.
CancerCare is a national non-profit organization whose mission is to provide free professional help to people with all cancers through counseling, education, information and referral and direct financial assistance.
Different Gilda's Clubs have different programs for children with cancer and their families, but potentially a clubhouse could have groups for children and teens with cancer, groups for siblings, and groups for parents. Also a big part of Gilda's Club is workshops and classes - anything from art workshops to informational type things (like Ask the Doctor, Insurance Q & A, etc) and social events. Visit the Gilda's Club Worldwide website to find a Gilda's Club in your area.
This organization provides financial assistance to families (up to $500/year for outpatients), funds research, sponsors a national program in education for the public and the medical community, and publishes a large number of booklets on cancer-related topics.Brain Tumors
The ABTA produces publications about brain tumors, holds patient conferences, offers support by telephone, publishes newsletters three times yearly, and funds research. The web site has information on these services and on brain tumors and their treatment.
Located in Georgia. Provides patient conferences, educational information, funds research, and at this time provides financial assistance to families in the southeast. The web site provides information on assistance and fundraisers, links to medical sites, and original articles on various aspects of pediatric brain cancer treatment.
Provides information and advocacy for children and families, funds research, and publishes three annual newsletters. The web site has information on tumors, treatment, family support, and a great kid's corner.
Provides support for families and children, resource guides, and funds for research. The web site offers practical information on school issues, hospital stays, and going home, as well as a medical overview of brain cancers.
The Foundation is based in Australia and assists families of children with brain tumors. The web site, begun in 2001, is a good source of information on pediatric brain tumors, including a bibliography of journal articles and clinical trials as well as good descriptions of brain tumors and their treatment.
Provides supportive services for families of children with brain and spinal cord tumors. Offers a variety of services in the New York-New Jersey area including counseling with trained specialists and educational programs. At this time (6/02), the web site doesn't have a lot of information other than contact information for support.
The neurofibromatoses (NF) are a set of genetic disorders which cause tumors to grow along various types of nerves. NNFF funds research to find effective treatments and a cure for neurofibromatosis. It provides direct services to children and adults with NF, as well as information and resources to the public and medical professionals.
The Pediatric Brain Tumor Foundation of the United States (PBTFUS) seeks to find the cause and cure of brain tumors in children by supporting medical research, increasing public awareness of the disease and aiding in early detection and treatment of childhood brain tumors. Promotes awareness of pediatric brain tumors, provides patient support, online conferences, and publishes educational materials and a quarterly newsletter. Scholarships are available for pediatric brain tumor survivors who wish to extend their education past the high school level (see the scholarship page on ped-onc).
Provides resource guides and educational materials, public education and patient conferences, telephone support, and funds for research. Publishes six newsletters yearly and a brain tumor booklist (bibliography of helpful books). The web site has useful information about brain tumors.
Provides telephone support, national and regional patient conferences, publications, free quarterly newsletter, caregiver programs, patient support network, support groups, and funds for research. The web site publishes the newsletter (and archives thereof) online, fact sheets, clinical trials, "ask the health professional", and helps for coping, including message boards and support groups. (Not peds specific; located in the San Francisco Bay Area.)
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. The website has an interesting fact page, faces of brain tumors, and related legislative issues.
This Los Angeles-based network sponsors lectures, social events, support groups, phone and e-mail network, "veteran parent" programs (organized mentoring at participating hospitals), and parent advisory councils (national and local). The web site publishes the newsletters online.