Knowledge and information are empowering, and chance favors the prepared mind. Whether you are a patient, supporter/family member, or caregiver, the more informed you are, the better decisions you will make in relation to oral cancer. This list of resources on the web is constantly being updated. You will find support organizations, databases, governmental agencies which deal with cancer, private cancer foundations and societies, cancer treatment and research centers, and sites related to individual caregivers who are members of the Oral Cancer Foundation. If you would like to be added to our resources list, please contact us
Government Organizations
FDA Cancer Tools
http://www.fda.gov/cder/cancer
FDA Cancer Tools contains a variety of information related to cancer and approved cancer drug therapies.
The National Cancer Institute
- NCI Public Inquiries Office
- Building 31, Room 10A03
- 31 Center Drive, MSC 2580
- Bethesda, MD 20892-2580
- 1-800-4-CANCER
National Health Information Society
- Referral Specialist
- P.O. Box 1133
- Washington, DC 20013-1133
- 1-800-336-4797
The National Health Information Center (NHIC) is a health information referral service. NHIC puts health professionals and consumers who have health questions in touch with those organizations that are best able to provide answers.
National Institute of Dental and Craniofacial Research
National Institutes of Health
- Bethesda, MD 20892-3500
- 301-496-4261.
The mission of the National Institute of Dental and Craniofacial Research (NIDCR) is to promote the general health of the American people by improving their oral, dental and craniofacial health. The NIDCR aims to promote health, to prevent diseases and conditions, and to develop new diagnostics and therapeutics.
National Coalition For Cancer Survivorship
- 1010 Wayne Ave. Ste.770
- Silver Spring, MD 20910
- 301-650-9127
- 877- NCCS-YES
NCCS brings together cancer-related research organizations and institutions, cancer support and advocacy groups, and thousands of cancer survivors to work together in addressing the needs of those living with cancer.
SEER Program
The Surveillance, Epidemiology, and End Results (SEER) Program of the National Cancer Institute is the most authoritative source of information on cancer incidence and survival in the United States. Case ascertainment for SEER began on January 1, 1973
The SEER Program currently collects and publishes cancer incidence and survival data from 11 population-based cancer registries and three supplemental registries covering approximately 14 percent of the US population. The expansion registries increase the coverage to approximately 26 percent. Information on more than 3 million in situ and invasive cancer cases is included in the SEER database, and approximately 170,000 new cases are accessioned each year within the SEER catchment areas. The SEER Registries routinely collect data on patient demographics, primary tumor site, morphology, stage at diagnosis, the first course of treatment, and follow-up for vital status. The SEER Program is the only comprehensive source of population-based information in the United States that includes the stage of cancer at the time of diagnosis and survival rates within each stage. The mortality data reported by SEER are provided by the National Center for Health Statistics.
PubMed
http://www.ncbi.nlm.nih.gov/pubmed
PubMed comprises more than 19 million citations for biomedical literature from MEDLINE, life science journals, and online books. Citations may include links to full-text content from PubMed Central and publisher websites. This is a trusted source for peer-reviewed information on all things medical not just oral cancer.
Cancer organizations / Foundations
Adenoid Cystic Carcinoma Research Foundation
- P.O. Box 442
- Needham, MA 02492
The Adenoid Cystic Carcinoma Research Foundation (ACCRF) seeks to accelerate the development of improved therapies and a cure for adenoid cystic carcinoma, a rare malignancy that typically originates in the salivary glands and other regions of the head and neck. In pursuit of its mission, ACCRF works to build a community of interested researchers who collaborate in implementing an innovative Research Agenda.”
Adenoid Cystic Carcinoma Organization International
- P.O. Box 15482
- San Diego, CA 92175-5482
Adenoid Cystic Carcinoma Organization International (“ACCOI”) is dedicated to furthering research, raising awareness and providing education regarding rare cancer adenoid cystic carcinoma (“ACC”). ACCOI’s website provides ACC patients and caregivers with information on research, clinical trials, treatment, organizations offering help with medical expenses, and much more. In addition to ACCOI’s website, ACCOI maintains an online support group for ACC patients and caregivers and an online doctors’ forum where doctors with an interest in ACC can share information on treatment and research. ACCOI also provides a quarterly newsletter in hard copy to various hospitals, as well as at its website.
American Society of Clinical Oncology
- 1900 Duke Street Suite 200
- Alexandria, VA 22314
- 703-299-0150
The American Society of Clinical Oncology is a nonprofit organization, which represents 15,000 cancer professionals worldwide; the society offers scientific and educational programs and a wide range of other initiatives intended to foster the exchange of information about cancer.
Association of Cancer Online Resources
- 173 Duane Street, Suite 3A
- New York NY 10013-3334
- (212)-226-5525
ACOR offers information and support through its integrated sytem of online discussion groups.
To further its mission, ACOR creates specific websites and also hosts a growing number of websites, created by:
* Patients for patients and caregivers.
many of those websites are considered to be clearly among the best sites for a particular disease or condition.
* Cancer Advocacy Organizations, many of which were created directly from the membership of an ACOR mailing list.
* Professional Organizations.
ACOR volunteers have also created a growing number of disease specific websites.
Association of Oncology Social Work
- 4700 W. Lake Ave.
- Glenview, IL 60025-1485
- 847-375-4721
- FAX 877-734-8752
The Association of Oncology Social Work (AOSW) is a non-profit, international organization dedicated to increasing awareness about the social, emotional, educational, and spiritual needs of cancer patients. AOSW’s mission is to advance excellence in the psychosocial care of persons with cancer, their families, and caregivers through: Networking. Education, Advocacy, Research and Resource Development. It supports its members’ commitment to helping and advocating for cancer patients by providing continuing education through conferences and publications; promoting clinical research; and fostering networking to address common issues and concerns. It is involved in numerous collaborative efforts with other national and international oncology organizations to advocate for the support and care of people with cancer.
CancerCare Inc.
- 275 7th Ave
- New York, NY 10001
- 1-800-813-HOPE
Since 1944, Cancer Care has been dedicated to providing emotional support, information, and practical help to people with cancer and their loved ones. They have helped over two million people nationwide through toll-free Counseling Lines and teleconference programs, their office-based services, and via the Internet. All services are provided free of charge and are available to people of all ages, with all types of cancer, at any stage of the disease. Their reach, including its cancer awareness initiatives, also extends to family members, caregivers, and professionals, providing vital information and assistance.
Fertile Hope
- PO Box 624
- New York, NY 10014
- (888) 994-HOPE
Fertile Hope is a national nonprofit organization dedicated to providing reproductive information, support and hope to cancer patients whose medical treatments present the risk of infertility. Fertile Hope is currently pursuing strategies in the following five areas: research, awareness, education, financial assistance and support. The organization will strive to advance fertility research, help advance the understanding of fertility risks and preservation options, allow and encourage personal educated decisions, make preservation treatments available regardless of economic status and help patients cope with important family planning issues. Founded in October 2001.
The National Comprehensive Cancer Network
The National Comprehensive Cancer Network (NCCN) is a not for profit, tax-exempt corporation that is an alliance of the world’s leading cancer centers. Established in 1995 to enhance the leadership role of member institutions in the evolving managed care environment, the NCCN seeks to support and strengthen the mission of member institutions in three basic areas:
- To provide state-of-the-art cancer care to the greatest number of patients in need;
- To advance the state of the art in cancer prevention, screening, diagnosis and treatment through excellence in basic and clinical research;
- To enhance the effectiveness and efficiency of cancer care delivery through the ongoing collection, synthesis and analysisof outcomes data.
Support for People with head and Neck Cancer (SPOHNC)
- POB 53
- Locust Valley, NY 11560
- (800) 377-0928
A patient support organization that provides group and individual emotional support. Through this service, patients or their family members are matched with volunteers who have had a similar diagnosis and treatment program. They have month meetings usually coordinated with a cancer center and facility staff. A newsletter is available by paid subscription 9 times per year.
Quackwatch, Inc
Quackwatch, Inc., a member of Consumer Federation of America, is a nonprofit corporation whose purpose is to combat health-related frauds, myths, fads, and fallacies. Its primary focus is on quackery-related information that is difficult or impossible to get elsewhere. Founded by Dr. Stephen Barrett in 1969 as the Lehigh Valley Committee Against Health Fraud, it was incorporated in 1970. In 1997, it assumed its current name and began developing a worldwide network of volunteers and expert advisors.
Vital Options
Vital Options® TeleSupport® Cancer Network is a not-for-profit cancer communications, support and advocacy organization dedicated to using communications technology to help people cope with cancer and whose mission is to facilitate a global cancer dialogue. Vital Options is the producer of The Group Room®—the nationally syndicated radio call-in cancer talk show which reaches more than half-a-million radio listeners each Sunday throughout the United States as well as others worldwide who hear the show simulcast live over the Internet(www.vitaloptions.org). This interactive website also provides cancer information and resources, as well as access to past broadcasts of The Group Room and toll free phone numbers for callers in the United States (1-800-GRP-ROOM; 1-800-477-7666) and Europe to enter live on-air discussions.
WebWhispers (Laryngectomy site)
http://www.webwhispers.org/index.asp
WebWhispers was started in 1996 for those who had questions about larynx cancer treatments, surgery, recovery, and what life is like after laryngectomy surgery. We are now the largest support group for individual Laryngectomy survivors of larynx and other throat cancers. We offer advice from those who have been there and education at the time it is needed.
Cancer Centers
NCI-designated Cancer Centers
This is the list of National Cancer Institute approved cancer centers in the US, listed by state alphabetically. The National Cancer Institute provides funding for research. Institutions apply for NCI designation (the selection is done through a peer-review process), and the term “NCI-designated” primarily has to do with the facility’s research interests — not the quality or scope of patient care.
An NCI-designated comprehensive cancer center means that the institution is involved in research in three areas: laboratory, clinical and population-based. All NCI-designated comprehensive cancer centers also treat patients. An NCI-designated cancer center concentrates research in one or two of those areas, and a few of these facilities — like the Wistar Institute in Philadelphia or the Salk Institute in San Diego — do research only. Further information is available here
MD Anderson Cancer Center
- 1515 Holcombe Blvd.
- Houston, TX 77030
- 1-800-392-1611
Consistently rated by independent survey, the number one head and neck cancer facility in the world. For the last 5 years it has juggled for this position with Memorial Sloan Kettering.
The James Cancer Hospital and Richard J. Solove Research Institute
- 300 West 10th Avenue, Suite 519
- Columbus, Ohio, 43210
- 1-800-293-5066
The Johns Hopkins Oncology Center
http://www.hopkinscancercenter.org
- 600 North Wolfe Street
- Baltimore, Maryland 21287-8943
- 410-955-8964
Greenbaum Cancer Center
http://www.umm.edu/cancer/index.html
Head and Neck Center
http://www.umm.edu/cancer/head_neck_resources.html
- 22 South Greene Street
- Baltimore, MD 21201
- 1-800-492-5538
The Mayo Clinic
- 00 First St. S.W.
- Rochester, MN 55905
- 507-284-2511
Memorial Sloan-Kettering Cancer Center
- 1275 York Avenue
- New York, NY 10021
- 212-639-2000
Consistently rated by independent survey, the number one head and neck cancer facility in the world. For the last 5 years it has juggled for this position with MD Anderson Cancer Center.
UCLA Medical Center
http://www.healthcare.ucla.edu
- 10833 Le Conte Ave.
- Los Angeles 90095
- 310-825-9111
UCLA’s Jonsson Comprehensive Cancer Center
http://www.cancer.mednet.ucla.edu
- 8-684 Factor Building
- Box 951781
- Los Angeles, CA 90095-1781
- 310-825-5268
UCLA’s Jonsson Comprehensive Cancer Center (JCCC) has established an international reputation for developing new cancer therapies, providing the best in experimental and traditional treatments, and expertly guiding and training the next generation of medical researchers. Site also has a searchable database.
Cancer Centers
NCI-designated Cancer Centers
This is the list of National Cancer Institute approved cancer centers in the US, listed by state alphabetically. The National Cancer Institute provides funding for research. Institutions apply for NCI designation (the selection is done through a peer-review process), and the term “NCI-designated” primarily has to do with the facility’s research interests — not the quality or scope of patient care.
An NCI-designated comprehensive cancer center means that the institution is involved in research in three areas: laboratory, clinical and population-based. All NCI-designated comprehensive cancer centers also treat patients. An NCI-designated cancer center concentrates research in one or two of those areas, and a few of these facilities — like the Wistar Institute in Philadelphia or the Salk Institute in San Diego — do research only. Further information is available here
MD Anderson Cancer Center
- 1515 Holcombe Blvd.
- Houston, TX 77030
- 1-800-392-1611
Consistently rated by independent survey, the number one head and neck cancer facility in the world. For the last 5 years it has juggled for this position with Memorial Sloan Kettering.
The James Cancer Hospital and Richard J. Solove Research Institute
- 300 West 10th Avenue, Suite 519
- Columbus, Ohio, 43210
- 1-800-293-5066
The Johns Hopkins Oncology Center
http://www.hopkinscancercenter.org
- 600 North Wolfe Street
- Baltimore, Maryland 21287-8943
- 410-955-8964
Greenbaum Cancer Center
http://www.umm.edu/cancer/index.html
Head and Neck Center
http://www.umm.edu/cancer/head_neck_resources.html
- 22 South Greene Street
- Baltimore, MD 21201
- 1-800-492-5538
The Mayo Clinic
- 00 First St. S.W.
- Rochester, MN 55905
- 507-284-2511
Memorial Sloan-Kettering Cancer Center
- 1275 York Avenue
- New York, NY 10021
- 212-639-2000
Consistently rated by independent survey, the number one head and neck cancer facility in the world. For the last 5 years it has juggled for this position with MD Anderson Cancer Center.
UCLA Medical Center
http://www.healthcare.ucla.edu
- 10833 Le Conte Ave.
- Los Angeles 90095
- 310-825-9111
UCLA’s Jonsson Comprehensive Cancer Center
http://www.cancer.mednet.ucla.edu
- 8-684 Factor Building
- Box 951781
- Los Angeles, CA 90095-1781
- 310-825-5268
UCLA’s Jonsson Comprehensive Cancer Center (JCCC) has established an international reputation for developing new cancer therapies, providing the best in experimental and traditional treatments, and expertly guiding and training the next generation of medical researchers. Site also has a searchable database.
Other Treatment Facilities and Research Centers (Links)
- Arthur G. James Cancer Hospital and Richard J. Solove Research Institute
- Columbia-Presbyterian Medical Center
- Dana-Farber Cancer Institute
- Duke Comprehensive Cancer Center
- Fred Hutchinson Cancer Research Center
- Fox Chase Cancer Center
- H. Lee Moffitt Cancer Center & Research Institute
- Hospital of the University of Pennsylvania
- Johns Hopkins Oncology Center
- Longwood Skull Base Program
- Mayo Clinic
- Massachusetts General Hospital Cancer Center
- Memorial Sloan-Kettering Cancer Center
- M.D. Anderson Cancer Center
- Mount Sinai Medical Center
- Roswell Park Cancer Institute
- Stanford University Hospital
- The Harvard Head and Neck Oncology Program
- The UCSF Comprehensive Cancer Center
- UCLA Medical Center
- Universityof Chicago Hospitals
- University of Colorado Health Sciences Center, University of Colorado Hospital
- University of Michigan Comprehensive Cancer Center
- University of Pittsburgh Medical Center
- University of Virginia Health Sciences Center
- University of Washington Medical Center
- Vanderbilt University Medical Center
- Wake Forest University School of Medicine
Medical Databases
Cancer terminology dictionary.
http://www.cancer.gov/dictionary/
A comprehensive dictionary of terms which will assist you in understanding terms that your doctors may use in relationship to cancer. Part of the National Cancer Institute website.
U.S. News “The Best Hospitals”
http://health.usnews.com/best-hospitals/rankings/cancer
Using original survey data and secondary analyses of data from the American Hospital Association and the Centers for Medicare & Medicaid Services, this is an index of hospital quality updated on an annual basis. This index has three components designed to represent three key aspects of care-structure, process, and outcome. More than 900 hospitals are listed in Cancer. All are experienced in treating difficult cases—a hospital is listed only if at least 417 inpatients who needed a high level of expertise in this specialty were treated there in 2005, 2006, and 2007, or if surveyed specialists recommended the hospital for such patients. The top 50 hospitals are ranked by score. Those below the top 50 are listed alphabetically. If this link brings up a 404 error page, they are still working on their web site. Look right below the 404 statement, and you will see a link to “hospitals” once there – select cancer, and you will be on the main list. We hope that US News will have this corrected soon.
Hospitals Worldwide
http://www.hospitalsworldwide.com
This is a general listing of hospitals, but does not rank them, and is for finding contact information of those close to a specific location that may be entered by the database user.
Medscape
Provides the most current medical information and services that provide reliable, digital clinical data and up-to-date information to healthcare professionals and consumers.
CancerNet
http://www.cancernet.nci.nih.gov
CancerNet provides current and accurate cancer information from the National Cancer Institute, the Federal Government’s principal agency for cancer research. You will find a wide range of cancer information, including treatment options, clinical trials, ways to reduce cancer risk, and ways to cope with cancer.
Doctor’s Guide to the Internet
OncoLink
OncoLink was founded in 1994 by Penn cancer specialists with a mission to help cancer patients, families, health care professionals and the general public get accurate cancer-related information at no charge.
Oral Cancer Gene Database
http://www.tumor-gene.org/Oral/index.html
Database containing information about genes which are targets for cancer-causing mutations in oral cancers.