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Additional Resources

The following links are intended for those who have been diagnosed with oral cancer and are seeking information and support resources. Your health care team will also be a valuable source of information for you and your family as you progress with treatment and care of oral cancer.

To visit any of the web sites listed below copy the link and paste in the address field of a web browser.

Government Organizations

The National Cancer Institute
www.cancer.gov
NCI Public Inquiries Office
Building 31, Room 10A03
31 Center Drive, MSC 2580
Bethesda, MD 20892-2580
1-800-4-CANCER
The National Cancer Institute (NCI), in addition to a comprehensive web site about oral cancer, publishes books and pamphlets to help people and their families and friends better understand oral cancer. The link below describes symptoms, diagnosis and treatment. It also contains information about rehabilitation and support resources to help patients cope with oral cancer.
www.cancer.gov/cancertopics/types/oral

National Health Information Center
www.health.gov/nhic
Referral Specialist
P.O. Box 1133
Washington, DC 20013-1133
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 Institutes of Health
www.nlm.nih.gov/medlineplus/oralcancer.html
9000 Rockville Pike
Bethesda, Maryland 20892
The National Institutes of Health have substantial information available on their web site to learn more about the disease, treatment options and how to cope with the diagnosis. This site also contains links to articles and additional resources patients and families may find helpful.

National Institute of Dental and Craniofacial Research
www.nidcr.nih.gov
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
www.canceradvocacy.org
1010 Wayne Ave. Ste.770
Silver Spring, MD 20910
301-650-9127 or 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
seer.cancer.gov
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 U.S. 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, 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 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.

Cancer Organizations and Foundations

American Cancer Society
www.cancer.org
The American Cancer Society (ACS) is a nationwide, community-based voluntary health organization dedicated to eliminating cancer as a major health problem. Headquartered in Atlanta, Georgia, the ACS has 12 chartered divisions, more than 900 local offices nationwide, and a presence in more than 5,100 communities.

Adenoid Cystic Carcinoma Organization International
www.accoi.org
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 the rare cancer adenoid cystic carcinoma (ACC). ACCOI’s web site 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 web site, 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 web site.

American Society of Clinical Oncology
www.asco.org
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
www.acor.org
173 Duane Street, Suite 3A
New York NY 10013-3334
212-226-5525
ACOR offers information and support through its integrated system of online discussion groups.
To further its mission, ACOR creates specific web sites and hosts a growing number of web sites created by:

Patients for patients and caregivers. Many of those web sites 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

Association of Oncology Social Work
www.aosw.org
4700 W. Lake Ave.
Glenview, IL 60025-1485
847-375-4721
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.

Cancer Care Inc.
www.cancercare.org
275 7th Ave
New York, NY 10001
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 more than 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.

CancerFatigue.org
www.cancerfatigue.org
Cancer-related fatigue is the most common and debilitating side effect of cancer and its treatment. In fact, most people living with cancer experience mild to extreme fatigue. A recent survey shows cancer-related fatigue affects 76 percent of cancer patients undergoing chemotherapy. The Oncology Nursing Society has developed this web site to provide you with multiple resources to get the information you need about cancer fatigue.

The Lance Armstrong Foundation (LAF)
www.laf.org
The Lance Armstrong Foundation (LAF) exists to enhance the quality of life for those living with, through and beyond cancer. Founded in 1997 by cancer survivor and champion cyclist Lance Armstrong, the LAF seeks to promote the optimal physical, psychological, social recovery and care of cancer survivors and their loved ones. The LAF works to define, refine and improve services for cancer survivors and to facilitate the delivery of those services—with a large dose of hope—to patients, their families and other loved ones touched by the disease.

People Living With Cancer
www.cancer.net
People Living with Cancer, the patient information web site of the American Society of Clinical Oncology (ASCO), provides oncologist-approved information on more than 50 types of cancer and their treatments, clinical trials, coping and side effects. Additional resources include a Find an Oncologist database, live chats, message boards, a drug database and links to patient support organizations. The site is designed to help people with cancer make informed health-care decisions.

The National Comprehensive Cancer Network
www.nccn.org
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 analysis of outcomes data.

The Oral Cancer Foundation
www.oralcancerfoundation.org
The Oral Cancer Foundation is a national public service, non-profit entity designed to reduce suffering and save lives through prevention, education, research, advocacy and patient support activities. Oral cancer is the largest group of those cancers which fall into the head and neck cancer category.

Shared Experience
www.sharedexperience.org
Shared Experience is a non-profit, searchable collection of first-hand accounts by cancer patients, their caregivers and loved ones. There are more than 1900 experiences posted. Individuals may leave their e-mail addresses and communicate with others through this web site. While not specific to oral cancer, there is a wealth of posted stories about dealing with the cancer experience itself.

Support for People with Oral and Head and Neck Cancer (SPOHNC)
www.spohnc.org
SPOHNC is a patient-directed, self-help organization dedicated to meeting the needs of oral and head and neck cancer patients.

Vital Options
www.vitaloptions.org
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 web site 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.

Head and Neck Cancer Alliance
(formerly known as The Yul Brynner Head and Neck Cancer Foundation)
www.headandneck.org
The Head and Neck Cancer Alliance seeks to enable an organized and strategic alliance of all stakeholders to dramatically shift the stage of discovery of head and neck cancers through united and collaborative efforts in prevention, early detection and research.

Cancer Centers

NCI-designated Cancer Centers
www3.cancer.gov/cancercenters/centerslist.html
This site provides a list of National Cancer Institute approved cancer centers in the U.S., listed by state alphabetically.

University of Texas M.D. Anderson Cancer Center
www.mdanderson.com
1515 Holcombe Blvd.
Houston, TX 77030
800-392-1611
M.D. Anderson Cancer Center is a world-renowned cancer research institute known for its high-quality care and leading clinical studies to advance cancer outcomes. U.S. News and World Report ranked M.D. Anderson Cancer Center as the number one cancer center in the United States in 2010, a position the hospital has held for at least three years.

The Ohio State University Comprehensive Cancer Center
www.cancer.osu.edu
300 West 10th Avenue, Suite 519
Columbus, Ohio, 43210
800-293-5066

The Johns Hopkins Head and Neck Cancer Center
www.hopkinsmedicine.org/kimmel_cancer_center/
600 North Wolfe Street
Baltimore, Maryland 21287-8943
410-955-8964

University of Maryland Marlene and Stewart Greenebaum Cancer Center
www.umm.edu/cancer/index.html

The Mayo Clinic
www.mayo.edu
200 First St. S.W.
Rochester, MN 55905
507-284-2511

Memorial Sloan-Kettering Cancer Center
www.mskcc.org
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. This hospital is consistently ranked as one of the top five cancer centers in the U.S. News and World Report Best Hospitals – Cancer listing.

UCLA's Jonsson Comprehensive Cancer Center
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 includes a searchable database.

Other Treatment Facilities and Research Centers:

Columbia-Presbyterian Medical Center
Dana-Farber Cancer Institute (Boston)
Duke Comprehensive Cancer Center
Fred Hutchinson Cancer Research Center
Fox Chase Cancer Center (West Chester, PA)
H. Lee Moffitt Cancer Center & Research Institute
Hospital of the University of Pennsylvania
Longwood Skull Base Program
Massachusetts General Hospital 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
University of 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
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 web site.

Annual List of Best Hospitals "U.S. News and World Report"
health.usnews.com/best-hospitals
This annual list from U.S. News & World Report is generated each year to help patients find the hospital that's best for them and their family. The results are generated from an extensive research process of combing through 5,000 hospitals in 16 adult specialties and 10 pediatric specialties.

PubMed: U.S. National Library of Medicine
National Institutes of Health
www.pubmed.gov
Developed by the National Center for Biotechnology Information, PubMed comprises more than 20 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 web sites.

Hospitals Worldwide
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
www.medscape.com
Provides the most current medical information and services that provide reliable, digital clinical data and up-to-date information to health-care professionals and consumers.

Cancer.gov
www.cancer.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.

OncoLink
www.oncolink.com
OncoLink was founded in 1994 by cancer specialists at the Abramson Cancer Center of the University of Pennsylvania with a mission to help cancer patients, families, health-care professionals and the general public get accurate cancer-related information at no charge.

Professional Societies

American Association for Cancer Research
www.aacr.org
Public Ledger Building, Suite 826
150 South Independence Mall West
Philadelphia, PA 19106-3483
215-440-9300
The American Association for Cancer Research (AACR), a scientific society of more than 17,000 laboratory and clinical cancer researchers, was founded in 1907 to facilitate communication and dissemination of knowledge among scientists and others dedicated to the cancer problem; to foster research in cancer and related biomedical sciences; to encourage presentation and discussion of new and important observations in the field; to foster public education, science education and training; and to advance the understanding of cancer etiology, prevention, diagnosis and treatment throughout the world.

American Head and Neck Society
www.headandneckcancer.org
11300 W. Olympic Blvd, Suite 600
Los Angeles, CA 90064
310-437-0559
In 1998, the American Head and Neck Society (AHNS) became the single largest organization in North America for the advancement of research and education in head and neck oncology. The merger of two societies, the American Society for Head and Neck Surgery and the Society of Head and Neck Surgeons, formed the American Head and Neck Society. The society was formed to promote and advance the knowledge of prevention, diagnosis, treatment and rehabilitation of neoplasms and other diseases of the head and neck.

American Academy of Otolaryngology - Head and Neck Surgery
www.entnet.org
One Prince Street
Alexandria, VA 22314-3357
703-836-4444
The world's largest society of physicians who treat disorders of the ear, nose, throat and related structures of the head and neck.

Find an ENT web resource
www.entnet.org/ent_otolaryngologist.cfm
The special skills of otolaryngologists, also called ear, nose and throat doctors, include diagnosing and managing diseases of the sinuses, larynx (voice box), oral cavity and upper pharynx (mouth and throat), as well as structures of the neck and face. Otolaryngologists diagnose, treat and manage specialty-specific disorders as well as many primary care problems in children and adults. This web resource will allow you to find an ENT specialist in any geographic area in the U.S. by searching using an area code or geographic location.

American Dental Association
www.ada.org
211 E. Chicago Ave.
Chicago, IL 60611
312-440-2500
The ADA is the professional association of dentists dedicated to serving both the public and the profession of dentistry. The ADA assists in education, research, advocacy and the development of standards in the dental industry.

American Association of Oral and Maxillofacial Surgeons
www.aaoms.org
9700 West Bryn Mawr Avenue
Rosemont, IL 60018-5701
847-678-6200
AAOMS is a professional association of oral and maxillofacial surgeons and is dedicated to promoting the highest quality of patient care and education.

American Speech-Language-Hearing Association
www.asha.org
10801 Rockville Pike
Rockville, MD 20852
This site has excellent information and resources related to speech and swallowing disorders, both which may affect those who have had surgery for oral cancer. References to therapists are also on this link.

The American Dental Hygienists' Association
www.adha.org
444 North Michigan Avenue, Suite 3400
Chicago, IL 60611
312-440-8900
The mission of the ADHA is to advance the art and science of dental hygiene by increasing the awareness of, and ensuring access to, quality, cost-effective oral health care. Site has good oral cancer information.

American Society for Therapeutic Radiology and Oncology (ASTRO)
www.astro.org/patients
12500 Fair Lakes Circle, Suite 375
Fairfax, VA 22032
703-502-1550
The first organization of its kind, this group of medical professionals from hospitals and cancer treatment centers around the world make up the radiation therapy treatment teams that are critical in the fight against cancer.

Clinical Trials

Center Watch
www.centerwatch.com
A service listing of clinical trials throughout the United States.

ClinicalTrials.gov
www.clinicaltrials.gov
The U.S. National Institutes of Health, through its National Library of Medicine, developed ClinicalTrials.gov to provide patients, family members and members of the public current information about clinical research studies.

Publications

MedBio World
www.medbioworld.com