If you are a person living with a rare cancer, or a parent of a child with a rare cancer, this article will provide tips and resources to help you obtain information about your specific diagnosis and treatment options.
There are a variety of resources available that can provide credible information and support. The Internet is the most frequently used resource to gather information today, but it is important to discuss your findings with your doctor, so you can make important treatment decisions together.
It is also important to get the support you need emotionally. Sometimes, this may seem difficult to accomplish since support groups for rare cancers can be hard to find. However, new groups are being formed constantly, and sharing your experience with others that may be in a similar situation may help you gain insight about the diagnosis and cope more effectively. In particular, online support groups and discussion forums are ways to communicate with other people who may be having a similar experience, even if people do not live near each other. Knowing you are not alone can be comforting and reassuring.
Cancer.Net is dedicated to providing up-to-date, credible information and support resources to patients, their families, and caregivers. You can find information on:
Some additional educational and supportive resources are listed below.
National Organization for Rare Disorders (NORD)
55 Kenosia Ave.
P.O. Box 1968
Danbury, CT 068143-1968
Phone: 203-744-0100
www.rarediseases.org
NORD is a nonprofit organization that provides information about rare diseases, patient resource organizations, and educational research programs. Organization databases give you access to more than 200 patient organizations and other support services. Online support is also available for people with a rare disease, their families and friends, and caregivers.
Rare Cancer Alliance
1649 N Pacana Way
Green Valley, AZ 85614
Toll Free: 800-345-6324
Phone: 206-600-5327
www.rare-cancer.org
The Rare Cancer Alliance provides information and support to adult and pediatric patients. Its website includes patient forums, where you can communicate with others who may have the same type of cancer. Links to other websites about rare cancers for disease specific information is also available. The Rare Cancer Alliance also provides a list of links to educational resources on specific cancers.
CureSearch: Children's Oncology Group and the National Childhood Cancer Foundation
www.curesearch.org
CureSearch
Children's Oncology Group
Research Operations Center
440 East Huntington Dr., Ste. 400
Arcadia, CA 91006-3776
Phone: 800-458-6223
CureSearch
National Childhood Cancer Foundation
4600 East West Highway, Ste. 600
Bethesda, MD 20814-3457
Phone: 800-458-6223
Through a combined effort of the Children's Oncology Group and the National Childhood Cancer Foundation, CureSearch provides information on childhood cancers, treatment strategies, and wellness programs. A listing of local, national, and international organizations offers educational and supportive resources for pediatric patients and their families. Discussion forums offer an opportunity for patients and families to communicate with other children and families who may share a similar experience.
National Cancer Institute (NCI)
6116 Executive Blvd., Room 3036A
Bethesda, MD 20892-8322
Phone: 800-4 CANCER
www.cancer.gov
The NCI website, a service of the National Institutes of Health, provides up-to-date information on rare adult and pediatric cancers. An important feature of the website is the NCI clinical trials database, which provides information on research studies that are open to patients. Also, the NCI's Cancer Information Service (CIS) provides online support and live help to discuss any questions or concerns you may have. You can find the link for CIS on NCI's home page at www.cancer.gov, or access it directly at http://cis.nci.nih.gov. You can also find out about clinical trials at www.cancer.gov/clinicaltrials.
Association of Cancer Online Resources (ACOR)
173 Duane St., Ste. 3A
New York, NY 10013-3334
Phone: 212-226-5525
www.ACOR.org
ACOR is an online resource guide providing information and support to people with cancer and their families and friends. You can access information on a broad range of cancers, support groups, research findings, and clinical trials. Online discussion groups provide an open forum where patients and caregivers can share similar experiences.
National Library of Medicine
8600 Rockville Pike
Bethesda, MD 20894
Phone: 301-594-5983
www.nlm.nih.gov
The National Library of Medicine is located on the campus of the National Institutes of Health and offers information in all areas of health care. Through its website, you can search medical literature using a service called PubMed/Medline. You can access PubMed directly at www.pubmed.org.
National Comprehensive Cancer Network (NCCN)
500 Old York Rd., Ste. 250
Jenkintown, PA 19046
Phone: 215-690-0300
www.nccn.org
The NCCN is an organization made up of 20 of the world's leading cancer centers. Information on rare pediatric and adult cancer programs, cancer resources, and clinical trials can be found in the Cancer Resource section of its website.
American Association of Clinical Research (AACR)
61 S Chestnut St., 17th Floor
Philadelphia, PA 19106
Phone: 215-440-9300
Toll Free: 866-423-3965
www.aacr.org
The AACR provides patients and their families with information about research findings and clinical trials, as well as information about a broad range of cancers including rare cancers (organized by organ site). On the website, cancer information sheets are organized by cancer type and a Public Media section provides a comprehensive list of cancer resources.
Additional resources
American Cancer Society, www.cancer.org
CancerCare, www.cancercare.org
More Information
Cancer.Net Guides to Cancer
Evaluating Cancer Information on the Internet
Printer-Friendly
E-mail this page