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The following excerpt is taken from Appendix A of Colon & Rectal Cancer: A Comprehensive Guide for Patients & Families by Lorraine Johnston, copyright 2000 by O'Reilly & Associates, Inc. For book orders/information, call (800) 998-9938. Permission is granted to print and distribute this excerpt for noncommercial use as long as the above source is included. The information in this article is meant to educate and should not be used as an alternative for professional medical care.

General colorectal cancer organizations

Colon Cancer Alliance
175 Ninth Avenue
New York, NY 10011
c/o Julian Sheffield, Treasurer CCA
Phone (toll-free): (877) 422-2030

The Colon Cancer Alliance brings the voice of survivors to battle colorectal cancer through patient support, education, research and advocacy.

Colorectal Cancer Association of Canada
180 Bloor Street West
Suite 904
Toronto, Ontario
M5S 2V6 Canada
Phone (toll-free): (888) 318-9442

Offers support groups, newsletter, conference, and advocacy programs.

Colorectal Cancer Network
PO Box 182
Kensington, MD 20895-0182
Phone: (301) 879-1500

Colorectal Cancer Network offers support groups; aggressive awareness, screening, and early detection programs; and legislative action.

Hereditary Cancer Institute
Creighton University School of Medicine
Preventive Medicine
2500 California Plaza
Omaha, NE 68178
Phone: (800) 648-8133

Hereditary Cancer Institute provides educational material and can help evaluate families for possible hereditary cancers.

Hereditary Colon Cancer Association (HCCA)
3601 N. 4th Avenue
Suite 201
Sioux Falls, SD 57104
Phone: (800)-264-6783

Promotes awareness, education and prevention of hereditary colon cancer and raises awareness of the need for more research.

Hereditary Colorectal Cancer Polyposis Registry
Johns Hopkins Hospital
550 North Broadway, Suite 108
Baltimore, MD 21205
Phone: (888) 772-6566

Hereditary Colorectal Cancer Polyposis Registry provides an opportunity to participate in research on hereditary colorectal cancer.

PO Box 11
Conynghan, PA 18219
Phone: (570) 788-3712

Intestinal Multiple Polyposis and Colorectal Cancer (IMPACC) is a clearinghouse for information about polyposis.

National Lymphedema Network
Latham Square
1611 Telegraph Ave, Suite 1111
Oakland, CA 94612-2138
Phone: (510) 208-3200
Fax: (510) 208-3200
Info Line: (800) 541-3259

Provides information on swollen limbs which may occur soon or many years after treatment.

Ostomy assistance

International Ostomy Association
c /o British Colostomy Association
15 Station Road, Reading, Berks
England RG1 1LG

Ostomy Rehabilitation Program
American Cancer Society
Phone: (800) ACS-2345

United Ostomy Association
19772 MacArthur Boulevard, Suite 200
Irvine, CA 92612-2405
Phone: (800) 826-0826

Holds in-person support groups throughout the US.

Wound Ostomy and Continence Nurses Society
4700 W. Lake Avenue
Glenview, IL 60025
Phone: (888) 224-WOCN (9626)

Can refer you to an enterostomal therapy nurse in your area.

Colorectal cancer support groups

A list of colorectal cancer-related internet support groups follows. Because the Internet is a dynamic resource, this list may not be comprehensive. The number of subscribers given was approximate at the time of writing, and will vary over time. The Association of Cancer Online Resources (ACOR) at: has pointers to cancer email discussion groups. ACOR offers a handy automatic subscription feature for these and other discussion mailing lists.
  • COLON, run by Bill Glenning and Gilles Frydman, offers medical discussion and emotional support for all colorectal cancer survivors and their loved ones. COLON has about 500 subscribers.

  • Cancer-Pain, Cancer-Sexuality, and Cancer-Fatigue are ACOR discussion groups for those with cancer-related side effects and long-term effects. These groups were formed in early 1999.

  • YAP, a discussion group for young adults age 18-25, dealing with their own illness or that of a loved one.

General cancer organizations

Agency for Health Care Policy and Research
P.O. Box 8547
Silver Spring, MD 20907-8547
Phone: (800) 358-9295

American Cancer Society National Office
1599 Clifton Road NE
Atlanta, GA 30329-4251
Phone: (800) ACS-2345

The American Cancer Society has many national and local programs, as well as a 24-hour support line, to help cancer survivors with problems such as travel, lodging, and emotional issues.

American Red Cross
430 17th Street NW
Washington, DC 20006
Phone: (202) 737-8300

The American Self-Help Clearinghouse
25 Pocono Road
Denville, NJ 07834
Phone: (973) 625-7101

Publishes a national directory of self-help groups.

Burger King Cancer Caring Center
4117 Liberty Avenue
Pittsburgh, PA 15224
Phone: (412) 622-1212

Provides counseling and a hotline service for those with cancer.

Cancer Family Care
7162 Reading Road, Suite 1050
Cincinnati, OH 45237
Phone: (513) 731-3346

Offers counseling to families affected by cancer.

Cancer Research Institute
681 Fifth Avenue
New York, NY 10022
Phone: (800) 99-CANCER

Offers services such as PDQ searches for clinical trials and free literature on cancer.

6500 Wilshire Boulevard, Suite 500
Los Angeles, CA 90048
Phone: (213) 655-3758

Offers many services to cancer survivors.

Center for Medical Consumers
237 Thompson Street
New York, NY 10012
Phone: (212) 674-7105

Provides information referrals to other organizations, and maintains a medical consumer's library.

Consumer Health Information Research Institute
300 East Pink Hill Road
Independence, MO 64057
Phone: (816) 228-4595

Provides an integrity index, and a credibility of publication index, including one that rates cancer books.

Hereditary Cancer Institute
Creighton University School of Medicine
Preventive Medicine
2500 California Plaza
Omaha, NE 68178
Phone: (800) 648-8133

Evaluates families for risk, and furnishes educational material to families with hereditary cancers.

Make Today Count
1235 East Cherokee
Springfield, MO 65804
Phone: (800) 432-2273

Offers peer support via local chapters for those with life-threatening illnesses.

Mautamar Project
1707 L Street NW, Suite 1060
Washington, DC 20036
Phone: (202) 332-5536

Offers support to lesbians with cancer and their families.

National AIDS Hotline
Phone: (800) 342-2437

Furnishes assistance to those with AIDS, including AIDS-related colorectal cancer.

National Cancer Care Foundation
1180 Avenue of the Americas
New York, NY 10036
Phone: (212) 382-2078 or (800) 813-HOPE

Provides information, support, and counseling for those affected by cancer.

National Coalition for Cancer Research
426 C Street NE
Washington, DC 20002
Phone: (202) 544-1880

An activist group that monitors government spending on cancer.

National Coalition for Cancer Survivorship
1010 Wayne Avenue, 5th Floor
Silver Spring, MD 20910
Phone: (301) 650-8868

Formed by cancer survivors to offer support and to effect change in progress against cancer through legislative efforts, they have published the Cancer Survivor's Almanac, a good reference for any cancer survivor.

National Family Caregivers Association
9621 East Bexhill Drive
Kensington, MD 20895
Phone: (800) 896-3650

Provides a variety of services to caregivers.

People Living Through Cancer, Inc.
323 Eighth Street, SW
Albuquerque, NM 87102
Phone: (505) 242-3263

Offers many services to cancer survivors.

PWA Coalition Hotline
50 West 17th Street, 8th Floor
New York, NY 10011
Phone: (800) 828-3280

Furnishes assistance to those with AIDS, including AIDS-related colorectal cancer. A really nice group of people.

R. A. Bloch Cancer Foundation
4410 Main Street
Kansas City, MO 64111
Phone: (816) 932-8453

Offers a variety of services to cancer patients and survivors, such as telephone-based second medical opinions and one-on-one phone contact between cancer survivors.

Well Spouse Foundation
610 Lexington Avenue, Suite 814
New York, NY 10022
Phone: (800) 838-0879

Offers support to those whose spouses are chronically ill.

Wellness Community
35 East Seventh Street, Suite 412
Cincinnati, OH 45202
Phone: (888) 793-WELL (9355)

Has branches throughout the US, check your local phone book for the chapter nearest you.

Children's cancer organizations

Candlelighters Foundation
PO Box 498
Kensington, MD 20895
Phone: (800) 366-2223

Provides information and support for parents of children with cancer.

Chai Lifeline/Camp Simcha
151 West 30th Street
New York, NY 10001
Phone: (800) 343-2527

Provides a free kosher camp for children of any religion with cancer, including transportation from anywhere in the world.

Children's Hospice International
901 North Pitt Street, Suite 230
Alexandria, VA 22314
Phone: (800) 24-CHILD (2-4453)

Provides many types of assistance to children with cancer and their families.

Federation for Children with Special Needs
1135 Tremont Street, Suite 420
Boston, MA 02120
Phone: (617) 236-7210 or (800) 331-0688

Provides support for parents regarding educational and healthcare rights.

Hole in the Wall Gang Camp
565 Ashford Center Road
Ashford, CT 06278
Phone: (860) 429-3444

A free ten-day summer camp for children ages seven through fifteen with cancer.

Make A Wish Foundation of America
3350 North Central Avenue, Suite 300
Phoenix, AZ 85012
Phone: (602) 279-WISH or (800) 722-WISH

Grants wishes to children under the age of eighteen with life-threatening illnesses.

Sibling Information Network
A. J. Papanikou Center
University of Connecticut
249 Glenbrook Road, Box U64
Storrs, CT 06269-2064
Phone: (203) 344-7500

Publishes a newsletter of interest to those who have children with developmental disabilities.

Special Love, Inc. (Camp Fantastic)
117 Youth Development Court
Winchester, VA 22602
Phone: (800) 930-2707

Offers recreational programs for children with cancer and their families.

Starlight Children's Foundation
5900 Wilshire Boulevard, Suite 2530
Los Angeles, CA 90036
Phone: (323) 634-0080

Fulfills wishes for seriously ill children ages 4 to 18.

Sunshine Foundation
P.O. Box 255
5400 County Road 547N
Loughman, FL 33858
Phone: (800) 457-1976 or (813) 424-4188 Web:

Grants wishes to sick children.

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