Groups and Organizations by Cancer Type
Brain Tumors
- American Brain Tumor Association
- 8550 W. Bryn Mawr Avenue, Suite 550, Chicago, IL 60631
- (800) 886-2282
- Email: info@abta.org
- 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 of Canada
- 620 Colborne Street, Suite 301, London, ON Canada N6B 3R9
- (519) 642-7755 Cross-Canada Toll Free 1-800-265-5106
- 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
- CBTF, 20312 Watkins Meadow Drive, Germantown, MD 20876
- (301) 515-2900 Toll Free: (877) 217-4166
- Email: cbtf@childhoodbraintumor.org
- 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
- 274 Madison Avenue Suite 1004, New York, NY 10016
- Toll Free: (866) 228-4673
- Email: info@cbtf.org
- 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.
- James Croft Hope Foundation
- P.O. Box 112, Innaloo, WA 6918
- Email: info@jamescroftshopefoundation.org.au
- 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.
- 115 King Street, Chappaqua, NY 10514-3460
- (914) 238-8384
- 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.
- Pediatric Brain Tumor Foundation of the United States
- 302 Ridgefield Court, Asheville, NC 28806
- (800) 253-6530
- 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.
- The National Brain Tumor Society
- Headquarters: 55 Chapel Street, Suite 200, Newton, MA 02458
- (617) 924-9997
- 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).
Leukemia and Lymphoma
- The Leukemia & Lymphoma Society
- 1311 Mamaroneck Avenue, White Plains, NY 10605
- (914) 949-5213 or 1-800-955-4LSA
- 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.
Neurofibromatosis (NF)
- National Neurofibromatosis Foundation
- Children's Tumor Foundation, 120 Wall Street, 16th Floor, New York, NY 10005-3904
- (212) 344-6633 Toll Free: 1-800-323-7938
- Email: info@ctf.org
- The neurofibromatosis (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.
Rare Diseases
- Memorial Sloan-Kettering Rare Cancer Page
- Email: info@mskcc.org
- Provides short descriptions of a variety of rare cancers with links to MSK Cancer Center physicians who treat a particular cancer.
- National Cancer Institute, Pediatric Oncology Branch, NIH
- Lists active treatment protocols for a variety of pediatric malignancies. Has a 22-bed inpatient unit and extensive outpatient services. Children with newly diagnosed or recurrent malignancies may be eligible for treatments.
Sarcomas
- GIST Support International
- 12 Bomaca Drive, Doylestown, PA 18901
- (215) 340-9374
- Email: gsi@gistsupport.org
- GIST Support International provides news, education, and support for patients affected by gastrointestinal stromal tumor and their families and friends.
- Osteosarcoma Online
- Email: http:www.cancer.gov/contact/email-us
- This website offers facts, information on the Osteosarcoma Clinical Care & Research Program and ways to support teens and young adults facing the disease.
- Sarcoma Foundation of America
- 9899 Main Street, Suite 204, Damascus, MD 20872
- (301) 253-8687
- Email: info@curesarcoma.org
- This website offers information and support for patients, informational links, clinical trial listings, and a public forum.
DISCLAIMER - While we tried to include potentially useful resources, this website is not exhaustive. New and additional resources may be available. Please let us know if there is a resource you would like to be included.