Charting Your Course : Seminar II - Navigation Aids : Resource Organizations

This list was compiled by the National Coalition for Cancer Survivorship.

Alliance for Lung Cancer Advocacy, Support & Education (ALCASE).
ALCASE provides people with lung cancer and their families a variety of services, including: toll-free telephone support and information; a quarterly newsletter, Spirit and Breath; customized research and resource services; phone buddies; and support groups.
Phone: 800-298-2436
Alliance of Genetic Support Groups (AGSG).
Provides resources and information on support groups to individuals with genetic disorders.
Phone: 800-336-GENE
American Association of Sex Educators, Counselors, and Therapists (AASECT).
AASECT provides names of licensed sex therapists.
Write: ASSACT, P.O.Box 238, Mt. Vernon, IA 52314-0238
American Cancer Society (ACS).
The ACS focuses on research and education and has local units throughout the United States, Washington, DC, and Puerto Rico. Local units offer public and professional education programs; referral to community resources; and patient and community services.
To locate ACS unit nearest you, look in the white pages of your phone book or dial 800-ACS-2345;
Fax: 512-927-5791;
Web site: www.cancer.org
American Pain Society(APS).
APS provides a directory of over 500 specialized pain treatment centers in the U.S.
Phone: 847-375-4700;
web site: www.ampainsoc.org
Cancer Information Service (CIS).
The CIS, a network of regional offices supported by the National Cancer Institute (NCI), provides easy-to-understand information in English and Spanish on cancer, its treatment, research, and local cancer-related services and community resources. The CIS is the source of the most accurate cancer information for patients, their families, the general public, and health professionals. The CIS also serves as a resource for education and outreach to minority audiences and people with limited access to health care information and services.
Phone: 800-4-CANCER (800-422-6237);
Fax: 301-402-2594;
Web site: http://rex.nci.nih.gov
Cancer Care, Inc.
Cancer Care is a nonprofit organization whose mission is to help people with cancer and their families. Through professional one-on-one counseling, support groups, educational programs, and telephone contact, Cancer Care provides guidance, information, and referrals to cancer patients and families over its toll-free line.
Phone: 800-813-HOPE (800-813-4673);
Fax 212-719-0263;
Web site: www.cancercare.org
Candlelighters Childhood Cancer Foundation (CCCF).
CCCF provides support, information, and advocacy regarding childhood cancer as well as referrals to local self-help groups. CCCF has a network of peer support groups for parents; publishes a quarterly newsletter and youth newsletter, bibliography; and other materials; answers information requests; maintains an Ombudsman Program on insurance concerns; and promotes a long-term survivors' network. Other services include bereavement counseling, pain management, and speaker's bureau.
Phone: 800-366-2223;
web site: www.candlelighters.org
Cure for Lymphoma Foundation (CFL).
CFL is a nationwide organization dedicated to raising money for lymphoma research and providing support and education for those whose lives have been touched by Hodgkin's disease and non-Hodgkin's lymphoma. Education and support services include: patient-to-patient telephone network, educational family forums, support groups, brochures, library and newsletter.
Phone: 212-213-9595;
Web site: www.cfl.org
International Myeloma Foundation (IMF).
IMF publishes a quarterly newsletter; hosts patient and family seminars and clinical conferences; and provides information on the treatment and management of multiple myeloma.
Phone: 360-676-7325;
web site: http://faceit.org/~letsfaceit
Leukemia Society of America (ISA).
The ISA is a national voluntary health dedicated to seeking the cause and cure of leukemia , lymphoma, Hodgkin's disease, and myeloma. Chapters throughout the country offer free counseling groups for patients and families; financial assistance; funding grants; professional education; speaker's bureau; publication; information; and referrals to resources.
Phone: 800-955-4LSA (800-955-4572);
Fax: 212-856-9686;
web site: www.leukemia.org
Local Support Groups.
Look in the white pages of you phone book (typically under "Cancer") to locate support organizations that may be of help. Other sources for support group information: your doctor's office; hospital; cancer centers; the local unit of the American Cancer Society; the National Coalition for Cancer Survivorship; or Cancer Care.
National Brain Tumor Foundation (NBTF).
NBTF publishes a newsletter, free resource guide, and lists of support groups for brain tumor patients and their families. NBTF also provides a patient-to-patient telephone support line; sponsors teleconferences; and funds research.
Phone:800-934-CURE;
web site: www.braintumor.org
National Childhood Cancer Foundation(NCCF).
NCCF provides patients advocacy, public education, referrals to pediatric cancer specialists, and information on pediatric clinical trials.
Phone: 800-458-6223;
web site: www.nccf.org
National Coalition for Cancer Survivorship (NCCS).
Founded of, by, and for cancer survivors, NCCS is a national grassroots network of individuals and organizations working on behalf of people with all types of cancer. Its mission is to lead and strengthen the survivorship movement, to empower cancer survivors, and to advocate for policy issues that affect cancer survivors' quality of life. NCCS serves as a clearinghouse for information on services and materials on survivorship; encourages the study of survivorship; and promotes the development of cancer support activities.
Write: NCCS, 1010 Wayne Avenue, Suite 505, Silver Spring, MD 20910;
Phone: 888-650-9127 (toll free);
Fax: 301-565-9670;
Web site: www.cansearch.org
National Hospice Organization (NHO).
NHO operated the National Hospice Helpline which provides general information and referrals to hospice programs throughout the country. NHO also advocates on behalf of patients and provides professional education.
Phone: 800-658-8898
National Kidney Cancer Association (NKCA).
NKCA educates and advocates on behalf of kidney cancer patients through the following services: information and referrals, speaker's bureau, and funding for research.
Phone:800-850-9132
National Lymphedema Network (NLN).
The NLN provides information about prevention and treatment of lymphedema, swelling that is a common complication of lymph node surgery. The NLN also helps organize local support groups focusing on the treatment and impact of lymphedema, ad publishes a nwesletter with personal stories as well as network news.
Phone: 800-541-3259;
Fax: 415-921-4284
National Ovarian Cancer Coalition (NOCC).
NOCC provides information on ovarian cancer and support groups. NOCC also advocates on behalf of individuals with ovarian cancer.
Phone: 888-682-7426
Patients Advocate Foundation (PAF).
PAF publishes a guide on managed care; help patients with managed care with insurance negotiation; and provides legal intervention assistance through its National Legal Resources Network.
Phone: 800-532-5274;
web site: www.patientadvocate.org
Support for People with Oral and Head and Back Cancer (SPOHNC).
SPOHNC is a patient-directed, self-help organization which addresses the broad emotional, pyschological, and humanistic needs of persons with oral and head and neck cancers. Services include small group meetings, patient networking, nationwide newsletter, and general information for the patients and family.
Phone: 516-759-5333;
Fax: 516-671-8794;
web site: www.spohnc.org
Susan G. Komen Breast Cancer Foundation.
The Susan G. Komen Breast Cancer Foundation is a national volunteer organization working through local chapters and Race for the Cure events across the country to eradicate breast cancer by advancing research, education, screening, and treatment. Trained volunteers provide information on breast health and answer questions on breast cancer.
Phone: 800-IM-AWARE (800-462-9273);
web site: www.breastcancerinfo.com
United Ostomy Association, Inc.
Dedicated to the complete rehabilitation of all ostomates, the United Ostomy Association sponsors local chapters the provide mutual support, visitor's programs, educational materials, advocacy services, and a quarterly publication to those who have had ostomy surgery.
Phone: 800-826-0826;
Fax: 714-660-9262;
web site: www.uoa.org
US TOO International, Inc. (US TOO)
US TOO provides prostate cancer survivors and their loved ones with emotional and educational support through an international network of chapters. US TOO also provides professional education for those working with prostate cancer survivors and publishes a quarterly newsletter.
Phone: 800-808-7866;
Fax: 708-32-1003;
web site: www.ustoo.com
Y-ME National Breast Cancer Organization (Y-ME).
Y-Me provides information, referral, and emotional support to individuals concerned about or diagnosed with breast cancer. Y-Me offers peer groups, counseling, volunteer matching, educational materials, referrals to community resources, and a detailed self-help manual for starting support groups. It also maintains a prosthesis bank for women with financial need. Men can ask to speak with male counselor.
Phone: 800-221-8597;
Spanish hotline: 800-986-9505;
Fax: 312-294-8597;
web site: www.y-me.org
Yul Brynner Head and Neck Cancer Foundation, Inc.
This organization provides information on head and neck cancer for patients and their families; organizes support groups on a national basis: and sponsors "Head and Neck Cancer Awareness Week," an annual nationwide campaign designed to increase public awareness and education on the causes, prevention, and treatment of head and neck cancer.
Phone: 615-343-5895;
web site: www.headandneck.org

This content is derived from the "Charting Your Course Seminars: A Whole Person Approach To Living With Cancer", provided by Norris Cotton Cancer Center.