Site Links
Reference
About this site
Section Links
on this page
Resources: Support Organizations
Important support organizations for childhood cancer are listed below; the comprehensive organizations are listed first, followed by ones for specific cancers or type of support.
Here is another list of childhood cancer organizations that I keep: Childhood Cancer Interest Groups. Many of these are small or geographic-area specific, but each organization that helps childhood cancer families or awareness for childhood cancer is important.
Candlelighters Childhood Cancer Foundation
PO Box 498
Kensington, MD 20895-0498(800) 366-CCCF
http://www.candlelighters.org
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.
Candlelighters Childhood Cancer Foundation Canada
National Office
55 Eglinton Avenue E, Suite 401
Toronto, ON Canada M4P 1G8
(800) 363-1062 (Canada only)
(416) 489-6440
http://www.candlelighters.ca/
Provides some of the same services as US Candlelighters.
Patient Advocacy Committee of the Children's Oncology Group (PAC).
Missy Layfield
Patient Advocacy Committee
Children's Oncology Group
440 E. Huntington Dr. Suite 300
P.O. Box 60012
Arcadia CA 91066-6012
Email: cog-pac@cfu.net
American Cancer Society
1599 Clifton Road NE
Atlanta, GA 30329-4251
(800) ACS-2345
http://www.cancer.org
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.
Canadian Cancer Society
565 W. 10th Avenue
Vancouver, BC Canada V5Z 4J4
(888) 939-3333 or (604) 872-4400
http://www.bc.cancer.ca/
Provides some of same services as the US Cancer Society.
Childhood Cancer Ombudsman Program
P.O. Box 595
Burgess, VA 22432
Fax: (804) 580-2502
Email: gpmonaco@rivnet.net
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.
National Children's Cancer Society
The National Children's Cancer Society helps children with cancer and their families by providing financial assistance, advocacy, education, and emotional support.
The National Children's Cancer Society
1015 Locust, Suite 600
St. Louis, MO 63101
314.241.1600 (telephone) or 1-800-FAMILY
314.241.6949 (fax)
http://www.children-cancer.com/
Children's Cancer Society Inc.
"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."
Children's Cancer Society Inc.
765 Mountain Ave. Suite 368
Springfield, NJ 07081
908 - 301 - 9717
Children's Cancer Society
Starlight Starbright
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 (see Starlight Starbright on the teens page.)
Teens: MyLion.org
Associated with the Independent Lens film A Lion in the House, MyLion.org offers a portal for teenagers and their leaders to step in and make a difference through community service to fight against childhood cancer.
Chai Lifeline
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 info@chailifeline.org for more information.
Emmanuel Cancer Foundation
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
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.
Gilda's Clubs
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 (www.gildasclub.org) and check if there's a Gilda's Club in your area, then call the individual clubhouse to find out what they offer.
Leukemia and Lymphoma
Leukemia & Lymphoma Society
1311 Mamaroneck Avenue
White Plains, NY 10605
(914) 949-5213or 1-800-955-4LSA
http://www.leukemia.org
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
American Brain Tumor Association
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.
Brain Tumor Foundation for Children, Inc.
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.
Brain Tumor Foundation of Canada
Provides patient and family support, publications, quarterly newsletter, and funds for research. On the web site, especially useful is a downloadable pdf file on pediatric brain tumors.
Childhood Brain Tumor Foundation
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.
Children’s Brain Tumor Foundation
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.
Making Headway Foundation, Inc.
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.
National Neurofibromatosis Foundation
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.
Pediatric Brain Tumor Foundation of the United States
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, internet conferences, and publishes educational materials and a quarterly newsletter, The Helping Hand. 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.
The National Brain Tumor Foundation
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
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.
We Can, Pediatric Brain Tumor Network
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.
General Disclaimer
These pages are intended for informational purposes only and are not intended to render medical advice. The information provided on Ped Onc Resource Center should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you suspect your child has a health problem, you should consult your health care provider.
contact webmaster/ped-onc home/last updated 7/05