Resources

Survivors' Guide for Bone Marrow/Stem Cell Transplant
What to Expect and How to Get Through It

Resource Listing

Bone Marrow/Stem Cell Transplant Information and Support

Autologous Blood and Marrow Transplant Registry (ABMTR)
IBMTR/ABMTR Statistical Center, Medical College of Wisconsin
8701 Watertown Plank Road
P.O. Box 26509
Milwaukee, WI 53226
414-456-8325
Email: ibmtr@mcw.edu
www.ibmtr.org

Blood and Marrow Transplant Information Network
2900 Skokie Valley Road, Suite B
Highland Park, IL 60035
888-597-7674 or 847-433-3313
Email: help@bmtinfonet.org
www.bmtinfonet.org

The Bone Marrow Foundation
337 E. 88th St., Suite 1B
New York, NY 10128
800-365-1336 or 212-838-3029
Email: thebmf@bonemarrow.org
www.bonemarrow.org

National Bone Marrow Transplant Link (nbmtLink)
20411 West 12 Mile Road, Suite 108
Southfield, MI 48076
800-LINK-BMT (800-546-5268) or 248-358-1886
Email: info@nbmtlink.org
www.nbmtlink.org

Bone Marrow Donor Information

Asians for Miracle Marrow Matches
231 E. Third St., Suite G107
Los Angeles, CA 90013
888-A3M-HOPE (888-236-4673)
Email: A3M@LTSC.org
www.asianmarrow.org

Caitlin Raymond International Registry
U Mass Memorial Medical Center
55 Lake Avenue North
Worcester, MA 01655
800-726-2824 or 508-334-8969
Email: info@crir.org
www.crir.org

HLA Registry Foundation, Inc.
70 Grand Avenue, Suite 103
River Edge, NJ 07661
888-HLA-DONOR or 201-487-0883
Email: info@hlaregistry.org
www.hlaregistry.org

National Marrow Donor Program (NMDP)
3001 Broadway, NE, Suite 500
Minneapolis, MN 55413
800-MARROW-2 or 800-526-7809
888-999-6743 (Office of Patient Advocacy)
www.marrow.org

Orchid Diagnostics
(formerly GeneScreen)
550 West Avenue
Stamford, CT 06902
800-543-3263
www.bonemarrowtest.com

Cancer Information and Support

American Cancer Society
1599 Clifton Road, NE
Atlanta, GA 30329
800-ACS-2345 or 404-320-3333
www.cancer.org

R. A. Bloch Cancer Foundation
4400 Main Street
Kansas City, MO 64111
800-433-0464 or 816-932-8453
Email: hotline@hrblock.com
www.blochcancer.org

Cancer Care, Inc.
275 Seventh Avenue
New York, NY 10001
800-813-HOPE or 212-712-8080
Email: info@cancercare.org
www.cancercare.org

Cancer Information Service
National Cancer Institute
6116 Executive Blvd., MSC 8322
Room 3036A
Bethesda, MD 20892
800-4-CANCER
www.cancer.gov

Cancervive, Inc.
11636 Chayote Street
Los Angeles, CA 90049
800-426-2873 or 310-203-9232
Email: cancervivr@aol.com
www.cancervive.org

Candlelighters Childhood Cancer Foundation
P.O. Box 498
Kensington, MD 20895
800-366-2223 or 301-962-3520
Email: info@candlelighters.org
www.candlelighters.org

Coping with Cancer Magazine
P.O. Box 682268
Franklin, TN 37068
615-790-2400
Email: copingmag@aol.com
www.copingmag.com

Cure Magazine
Cancer Information Group
3535 Worth St., Suite 4802
Dallas, TX 75246
214-820-4754
Email: editor@curetoday.com
www.curetoday.com

Friends’ Health Connection
P.O. Box 114
New Brunswick, NJ 08903
800-48-FRIEND or 732-418-1811
info@friendshealthconnection.org
www.48friend.com

Gilda’s Club Worldwide
322 Eighth Avenue, Suite 1402
New York, NY 10001
888-445-3248
Email: info@gildasclub.org
www.gildasclub.org

National Childhood Cancer Foundation
440 E. Huntington Dr., Suite 300
Arcadia, CA 91066
800-458-6223 or 626-447-1674
info@ConquerKidsCancer.org
www.nccf.org

National Children’s Cancer Society
1015 Locust, Suite 600
St. Louis, MO 63101
800-532-6459
Email: nccs@children-cancer.com
www.children-cancer.org

National Coalition for Cancer Survivorship
1010 Wayne Avenue, Suite 770
Silver Spring, MD 20910
877-NCCS-YES or 301-650-9127
Email: info@cansearch.org
www.canceradvocacy.org

National Family Caregivers Association
10400 Connecticut Ave., Suite 500
Kensington, MD 20895
800-896-3650
Email: info@nfcacares.org
www.nfcacares.org

Starbright Foundation
11835 W. Olympic Blvd., Suite 500
Los Angeles, CA 90064
800-315-2580 or 310-479-1212
Email: webmaster@starbright.org
www.starbright.org

Vital Options International TeleSupport Cancer Network
15821 Ventura Blvd, Suite 645
Encino, CA 91436
818-788-5225 or 800-477-7666
Email: info@vitaloptions.org
www.vitaloptions.org

The Wellness Community
35 East Seventh Street, Suite 412
Cincinnati, OH 45202
888-793-9355
E-mail help@wellness-community.org
www.thewellnesscommunity.org

Well Spouse Association
P.O. Box 30093
Elkins Park, PA 19027
800-838-0879
Email: info@wellspouse.org
www.wellspouse.org

Women’s Cancer Resource Center
5741 Telegraph
Oakland, CA 94609
888-421-7900 or 510-420-7900
Email: wcrc@wcrc.org
www.wcrc.org

Fertility

American Association of Tissue Banks
1350 Beverly Road, Suite 220-A
McLean, VA 22101
703-827-9582
Email: aatb@aatb.org
www.aatb.org

American Society for Reproductive Medicine
1209 Montgomery Highway
Birmingham, AL 35216
205-978-5000
Email: asrm@asrm.org
www.asrm.org

Genetics and IVF Institute
3020 Javier Road
Fairfax, VA 22031
800-552-4363 or 703-698-7355
Email: givf@givf.com
www.givf.com

Resolve Inc.
1310 Broadway
Somerville, MA 02144
888-623-0744
Email: info@resolve.org
www.resolve.org

Financial Assistance, Fundraising and Insurance Information

Cancer Legal Resource Center
919 S. Albany St.
Los Angeles, CA 90015
213-736-1455
www.lls.edu/community/clrc.htm

Children’s Organ Transplant Association (COTA)
2501 COTA Drive
Bloomington, IN 47403
800-366-2682
www.cota.org

Health Insurance Association of America
1201 F Street, NW, Suite 500
Washington, DC 20004
202-824-1600
Email: webmaster@hiaa.org www.hiaa.org

Jeffrey Katz Fund
(Southern California residents)
c/o Ronald McDonald House
4560 Fountain Avenue
Los Angeles, CA 90029
323-644-3000
www.larmh.org

The Medicine Program
P.O. Box 515
Doniphan, MO 63935
573-996-7300
Email: help@themedicineprogram.com
www.themedicineprogram.com

My Friends Care Bone Marrow Transplant Fund
(Michigan residents)
148 South Main Street, Suite 101
Mount Clemens, MI 48043
586-783-7390
Email: mfc@mich.com
www.myfriendscare.org

National Association of Hospital Hospitality Houses
P.O. Box 18087
Asheville, NC 28814
800-542-9730 or 828-253-1188
Email: helpinghomes@nahhh.org
www.nahhh.org

National Foundation for Transplants
1102 Brookfield, Suite 200
Memphis, TN 38119
800-489-3863 or 901-684-1697
www.transplants.org

Nielsen Organ Transplant Foundation
(Northeast Florida residents)
580 West 8th Street
Jacksonville, FL 32209
888-749-4850 or 904-244-9823
Email: nielsenfoundation@yahoo.com
www.geocities.com/nielsenfoundation

National Transplant Assistance Fund
3475 West Chester Pike, Suite 230
Newtown Square, PA 19073
800-642-8399 or 610-353-9684
Email: NTAF@transplantfund.org
www.transplantfund.org

Patient Advocacy Coalition, Inc.
777 East Girard Avenue
Englewood, CO 80110
303-744-7667
www.patientadvocacy.net

Pharmaceutical Research and Manufacturers of America
Prescription Drug Patient Assistance Programs
1100 Fifteenth Street, NW
Washington, DC 20005
202-835-3400
www.phrma.org

Disease-Related Information

Anemia
Aplastic Anemia & MDS International Foundation, Inc.
P.O. Box 613
Annapolis, MD 21404
800-747-2820 or 410-867-0242
Email: help@aamds.org
www.aplastic.org

Fanconi Anemia Research Fund
1801 Willamette Street, Suite 200
Eugene, OR 97401
541-687-4658
Email: info@fanconi.org
www.fanconi.org

Myeloproliferative Disease
Research Center
115 East 72nd Street
New York, NY 10021
800-HELP-MPD or 212-535-4200
www.acor.org/mpd

Brain Tumor
American Brain Tumor Association
2720 River Road, Suite 146
Des Plaines, IL 60018
800-886-2282 or 847-827-9910
Email: info@abta.org
www.abta.org

National Brain Tumor Foundation
414 Thirteenth Street, Suite 700
Oakland, CA 94612
800-934-CURE or 510-839-9777
Email: nbtf@braintumor.org
www.braintumor.org

Breast Cancer
Adelphi New York Statewide Breast Cancer Hotline and
Support Program
Adelphi Univ. School of Social Work
Garden City, NY 11530
800-877-8077 or 516-877-4444
Email: nysbchot@adelphi.edu
www.adelphi.edu/nysbreastcancer

National Alliance of Breast Cancer Organizations (NABCO)
9 East 37th Street, 10th Floor
New York, NY 10016
888-80-NABCO or 212-889-0606
Email: nabcoinfo@aol.com
www.nabco.org

The Susan G. Komen Breast Cancer Foundation
5005 LBJ Freeway, Suite 250
Dallas, TX 75244
800-462-9273 or 972-855-1600
Email: info@komen.org
www.komen.org

Y-Me National Breast Cancer Organization
212 West Van Buren, Suite 500
Chicago, IL 60607
800-221-2141 (English) or 800-986-
9505 (Spanish)
Email: help@y-me.org
www.y-me.org

Immune Deficiency Disorders
Immune Deficiency Foundation
40 W. Chesapeake Ave., Suite 308
Towson, MD 21204
800-296-4433
Email: idf@primaryimmune.org
www.primaryimmune.org

National Organization for Rare Disorders (NORD)
P.O. Box 1968
Danbury, CT 06813
800-999-6673 or 203-744-0100
Email: orphan@rarediseases.org
www.rarediseases.org

Leukemia & Lymphoma
Children’s Leukemia Foundation of Michigan
29777 Telegraph Road, Suite 1651
Southfield, MI 48034
800-825-2536 or 248-353-8222
Email: leukemiamichigan@voyager.net
www.leukemiamichigan.org

Leukemia Research Foundation
(Illinois residents and those within
a 100-mile radius of Chicago)
820 Davis Street, Suite 420
Evanston, IL 60201
847-424-0600
Email: LeukResear@aol.com
www.leukemia-research.org

The Leukemia & Lymphoma Society
1311 Mamaroneck Avenue
White Plains, NY 10605
800-955-4572 or 914-949-5213
Email: infocenter@leukemialymphoma.org
www.leukemia.org

Lymphoma Research Foundation
(formerly Cure for Lymphoma)
8800 Venice Blvd., Suite 207
Los Angeles, CA 90034
800-500-9976 or 310-204-7040
or
111 Broadway, 19th Floor
New York, NY 10006
800-235-6848 or 212-349-2910
Email: LRF@lymphoma.org
www.lymphoma.org

National Leukemia Research Association
585 Stewart Avenue, Suite 18
Garden City, NY 11530
516-222-1944
Email: clra@childrensleukemia.org
www.childrensleukemia.org

Multiple Myeloma
International Myeloma Foundation
12650 Riverside Drive, Suite 206
North Hollywood, CA 91607
800-452-2873
Email: TheIMF@myeloma.org
www.myeloma.org

Multiple Myeloma Research Foundation
3 Forest Street
New Canaan, CT 06840
203-972-1250
Email: themmrf@themmrf.org
www.multiplemyeloma.org

Transportation

Air Care Alliance
1515 East 71st Street, Suite 312
Tulsa, OK 74136
888-260-9707 or 918-745-0384
Email: mail@aircareall.org
www.aircareall.org

AirLifeLine
50 Fullerton Court, Suite 200
Sacramento, CA 95825
877-AIRLIFE or 916-641-7800
Email: staff@airlifeline.org
www.airlifeline.org

Corporate Angel Network
Westchester County Airport
One Loop Road
White Plains, NY 10604
866-328-1313 or 914-328-1313
Email: info@corpangelnetwork.org
www.corpangelnetwork.org

National Patient Travel Center
4620 Haygood Road, Suite 1
Virginia Beach, VA 23455
800-296-1217 or 757-318-9174
Email: mercymedical@erols.com
www.patienttravel.org

Information on the Internet

The Internet is a valuable tool for cancer or medical research. It
offers a wealth of information, some helpful, some misleading.
Rely on credible sources for information like hospitals or
medical associations. Proceed with caution when searching on the Internet. Evaluate material by asking:
- What is the source of this information?
- Is it factual or opinion?
- Is it based on someone’s experience?
- How current is this information?
- Is this site set up to promote a product?

When evaluating Internet sites, check the address (URL). The
final segment of the address offers a general idea of who is sponsoring the web site. Examples include:
.edu…site sponsored by a university
.gov…site sponsored by a government agency
.org…site sponsored by a nonprofit organization
.com...site sponsored by a commercial company

Cancer Web Sites

American Society of Clinical Oncology
www.asco.org

Breast Cancer Answers
www.peoplelivingwithcancer.org

Guide to Internet Resources for Cancer
www.cancerindex.org

Leukemia Links
www.acor.org/leukemia

Lymphoma Information Network
www.lymphomainfo.net

MEDLINEplus
www.medlineplus.org

Oncolink
www.oncolink.org

Physicians Data Query (PDQ)
www.cancer.gov

Clinical Trials Web Sites

www.cancer.gov/clinical_trials
www.cancercare.org
www.cancertrialshelp.org
www.centerwatch.com
www.cis.nci.nih.gov/resources/clinical.html
www.clinicaltrials.gov
www.oncolink.com

Additional Web Sites and Mailing Lists

AA-MDS-TALK
Listserv based mailing list in support of Aplastic Anemia and
Myelodysplastic Syndrome patients, families, and care providers
www.aafa-ner.org

Association of Cancer Online Resources (ACOR)
Offers information and support mailing lists about many types of
cancer and related disorders
www.acor.org

BMTnet
Portal to BMT resources, sponsored by seven international
blood and marrow transplant organizations
www.bmtnet.org

BMT Support Online
Interactive chat for bone marrow transplant patients
BMT-support@BMTSupport.org
www.bmtsupport.org

BMT-TALK
Online communication forum
http://listserv.acor.org/archives/bmt-talk.html

Blood and Marrow Transplant Information Network
Lists an online database of over 250 transplant centers in the U.S. and Canada
www.bmtinfonet.org

Health Insurance Information
www.healthinsuranceinfo.net

National Center for Complementary and Alternative Medicine
Offers information about complementary medicine used in
conjunction with standard treatments
www.nccam.nih.gov

Needy Meds
Information source for patient assistance programs
www.needymeds.com

Books

Across The Chasm, A Caregiver’s Story by Naomi L. Zikmund-Fisher (BMT Infonet)

Adult Leukemia: A Comprehensive Guide for Patients and Families by Barbara Lackritz

Anatomy of an Illness as Perceived by the Patient: Reflections on Healing and Regeneration by Norman Cousins

A Resource Guide for Bone Marrow/Stem Cell Transplant
(nbmtLink)

Autologous Stem Cell Transplant: A Handbook for Patients by Sue Stewart (BMT Infonet)

Bone Marrow Transplants: A Book of Basics for Patients by
Sue Stewart (BMT Infonet)

Cancer As A Turning Point: A Handbook for People with Cancer, Their Families, and Health Professionals by Lawrence LeShan

Cancer Talk by Selma Schimmel

Cancer Recovery Eating Plan: The Right Food to Help Fuel Your Recovery by Daniel Nixon, M.D.

Cancer Survivor’s Nutrition and Health Guide by Gene Spiller, Ph.D. and Bonnie Bruce DR.P.H., R.D.

The Caregiver’s Companion by Theola Jones

Caregivers' Guide for Bone Marrow/Stem Cell Tranplant
(nbmtLink)

Choices in Healing by Michael Lerner

The Courage to Laugh: Humor, Hope, and Healing in the Face of
Death and Dying by Allen Klein

Everyone’s Guide to Cancer Therapy, 3rd Edition, Malin, Md.
Dollinger, et al

Finding the Money: A Guide to Paying Your Medical Bills by Diane Tolley

Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness by Jon Kabat-Zinn, Ph.D.

Getting Well Again by Carl O. Simonton, M.D., et al

Grace and Grit by Traya and Ken Wilbur

Guide to Stress Reduction by L. John Mason, Ph.D.

Healing into Life and Death by Stephen Levine

The Healing Power of Humor: Techniques for Getting Through
Loss, Setbacks, Upsets, Disappointments, Difficulties, Trials, Tribulations, and All That by Allen Klein

Healing Yourself: A Step-by-Step Program for Better Health Through Imagery by Martin Rossman, M.D.

How to Live Between Office Visits by Bernie Siegel, M.D.

The Human Side of Cancer: Living with Hope, Coping with Uncertainty by Jimmie C. Holland, Sheldon Lewis

In the Country of Illness: Comfort and Advice for the Journey by Robert Lipsyte

Informed Decisions: The Complete Book of Cancer Diagnosis, Treatment, and Recovery by Harmon J. Eyre

It's Always Something by Gilda Radner

The Journey Through Cancer: An Oncologist’s Seven-Level Program for Healing and Transforming the Whole Person by Jeremy R. Geffen

Kitchen Table Wisdom: Stories That Heal by Rachel Naomi
Remen

Learn to Relax: A Practical Guide to Easing Tension and Conquering Stress by Mike George

Learning to Fall: The Blessings of an Imperfect Life by Philip
Simmons

Love, Medicine and Miracles by Bernie Siegel

Making Informed Medical Decisions: Where to Look and How to Use What You Find by Nancy Oster

Minding the Body, Mending the Mind by Joan Borysenko, Ph.D.

Mom’s Marijuana by Dan Shapiro

My Grandfather’s Blessings by Rachel Naomi Remen
The New Cancer Survivors: Living with Grace, Fighting with Spirit by Natalie Spingarn

Not Just One in Eight by Barbara Stevens

Peace, Love and Healing by Bernie Siegel

Stem Cell Transplant, A Companion Guide for Breast Cancer Patients (nbmtLink)

Sexuality and Cancer: For the Man/Woman Who Has Cancer and Their Partner (American Cancer Society)

Sexuality and Fertility After Cancer by Leslie R. Schover

Share Care-How to Organize a Group to Care for Someone Who Is Seriously Ill by Cappy Capossela and Sheila Warnock

Supportive Cancer Care: The Complete Guide for Patients and
Their Families by Ernest H., M.D. Rosenbaum, et al

Surviving Cancer Emotionally, Learning How to Heal by Roger
Granet, M.D.

Survivor, Taking Control of Your Fight Against Cancer by Laura
Landro

Take this Book to the Hospital with You: A Consumer Guide to Surviving Your Hospital Stay by Charles B. Inlander and Ed Weiner

Time On Fire by Evan Handler

Understanding Medical Information: A User’s Guide to Informatics and Decision Making by Theresa Jordan

When a Parent Has Cancer: A Guide for Caring for Your Children by Wendy Schlessel Harpham, M.D.

Where the Buffaloes Roam by Bob Stone and Jenny Humphries

You Can Conquer Cancer by Ian Gawler

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