Resource Directory
BONE MARROW TRANSPLANTS & DONORS
National Bone Marrow Transplant Link
Operates a 24–hour‚ toll–free number and provides peer support to bone marrow transplant (BMT) patients and their families. It serves as an information center for prospective BMT patients as well as a resource for health professionals.
(800) LINK-BMT (800-546-5268)
nbmtlink@aol.com
www.nbmtlink.org
National Marrow Donor Program®(NMDP)
Funded by the Federal Government to improve the effectiveness of the search for bone marrow donors. It keeps a registry of potential bone marrow donors and provides free information on bone marrow transplantation. Help available in English, Spanish, Chinese, Japanese, Vietnamese, and Korean.
(800) MARROW–2 (800-627-7692)
www.marrow.org
Blood and Marrow Transplant Information Network
Patient-friendly handbooks and a quarterly newsletter about transplantation. Links patients with survivors who can provide emotional support. Maintains an online Directory of Transplant Centers in the US and Canada, an online Directory of Drugs used during transplant, and an online Reource Directory. Offers attorney referrals for patients who have insurace disputes. Comprehensive website.
(888) 597-7674
help@bmtinfonet.org
www.bmtinfonet.org
Blood and Marrow Transplant Resources
BMT resources offer patients having a bone marrow transplant (BMT) or peripheral blood stem cell transplant (PBSCT) access to an enormous amount of information about these procedures. You can learn everything you need to know to sail through your treatment with flying colors. For patients considering a transplant, the tools are provided to help you decide if one of these procedures is your best treatment option.
(414) 870-4850
mytransplant@sbcglobal.net
www.BMTresources.org
BRAIN TUMORS
National Brain Tumor Foundation (NBTF)
Provides patients and their families with information on how to cope with their brain tumors. Spanish language help available.
(800) 934-CURE (800-934-2873)
nbtf@braintumor.org
www.braintumor.org
American Brain Tumor Association
Offers free publications, educational programs, social service consultations by telephone, a mentorship program, support group lists, a resource list of physicians, a pen pal program and funds research.
(800) 866-2282
abta@aol.com
http://hope.abta.org/site/PageServer
The Brain Tumor Society
Provides individualized patient/family information, publishes educational materials, sponsors professional and patient conferences, and funds research.
(800) 770-8287
info@tbts.org
www.tbts.org
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The Guardian Brain Foundation
The mission of The Guardian Brain Foundation is to help advance neuroscience research, provide support services and to improve quality of life for adults and children diagnosed with injuries and tumors of the brain.
(516) 679-5075
info@guardianbrain.com
www.guardianbrain.com
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BREAST CANCER
National Alliance of Breast Cancer Organizations (NABCO)
NABCO provides information about breast cancer and acts as an advocate for the legislative concerns of breast cancer patients and survivors.
(888)80-NABCO (888-806-2226)
www.nabco.org
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National Breast Cancer Coalition (NBCC)
A grassroots organization dedicated to ending breast cancer through action and advocacy. NBCC works to increase federal funding for breast cancer research, collaborate with the scientific community to implement new models of research; improve access to high quality health care; and expand the influence of breast cancer advocates in all aspects of the breast cancer decision-making process.
(800) 622-2838
www.natlbcc.org
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Sisters Network, Inc.
Seeks to increase local and national attention to the impact that breast cancer has in the African-American community. All chapters are run by breast cancer survivors and receive volunteer assistance.
(866)781-1808
sisnet4@aol.com
www.sistersnetworkinc.org
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The Susan G. Komen Breast Cancer Foundation
A toll-free breast cancer helpline (1-800-I’M AWARE®) is answered by trained volunteers whose lives have been personally touched by breast cancer. Breast health and breast cancer materials are available. Also includes information on Komen Race for the Cure.
(800) IM AWARE (800-462-9273)
www.komen.org
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Y-ME National Breast Cancer Organization, Inc.
Y–ME serves women with breast cancer and their families through their national hotline (available 24 hours a day)‚ open-door groups‚ early detection workshops‚ and support programs. Spanish language help available.
(800) 221-2141 (English); (800) 986-9505 (Spanish)
www.y-me.org
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About Breast Health
A resource for breast cancer patients or other concerned persons, this excellent site provides general information, an informative FAQ and a portal for people to contact physicians and support groups.
502-629-6950
info@AboutBreastHealth.com
www.aboutbreasthealth.com
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Booklet: "Getting Back on Track: Life After Treatment"
A comprehensive guidebook that uses non-medical terms to help patients cope with the physical, psychological and practical concerns they may face long after completion of active treatment.
(416) 340-3303
uhn.info@uhn.on.ca
http://www.uhn.ca
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Women Stories
The mission of WomenStories is to inspire, inform and support breast cancer patients by documenting and sharing survivors' experiences.
(800)775-5790
info@womenstories.org
www.womenstories.org/
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CHILDREN & YOUNG ADULTS
Candlelighters Childhood Cancer Foundation (CCCF)
A nonprofit organization that provides information‚ peer support‚ and advocacy. A financial aid list has organizations to which eligible families may apply for assistance.
(800) 366-CCCF (800-366-2223)
info@candlelighters.org
www.candlelighters.org
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Kids Konnected
Provides friendship, education, and support to kids who have a parent with cancer.
(800) 899-2866
info@kidskonnected.org
www.kidskonnected.org
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Planet Cancer
Planet Cancer is a community of young adults with cancer. It's a website to share insights, explore fears, laugh with others who just plain get it. They don't deny the dark side of illness and death here. But they also firmly believe that laughter and light can turn up in the strangest places.
(512) 481-9010
www.planetcancer.org
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Ronald McDonald House
Offers programs to help children including refuge from the hospital, a “home-away-from-home” and “Family Rooms” within hospitals.
(630) 823-7048
www.rmhc.com
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The Ulman Cancer Fund for Young Adults
Serves young adults worldwide through website and offers support groups for young adults affected by cancer, their family and friends.
(888) 393-FUND
info@ulmanfund.org
www.ulmanfund.org
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StarBright
The STARBRIGHT Family Rooom is an online community that provides information and support to help parents care for their seriously ill child. There is a new edition each month featuring information from both caregivers and healthcare professionals. Topics include managing finances, knowing your rights in school and insurance systems, and communicating with doctors. There are also message boards where parents can share their experiences and gain support from each other.
(800) 315-2580
www.starbright.org
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COLON CANCER
Colon Cancer Alliance
Deeply committed to peer support – in the form of a “buddies program” the Alliance makes it possible for patients to talk one-to-one with survivors and caregivers.
(877) 422-2030
gailrh@mindspring.com
www.ccalliance.org
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C3 Colorectal Cancer Coalition
A national, nonpartisan organization whose mission is to eliminate suffering and death due to colon and rectal cancer through advocacy. C3 pushes for research to improve screening, diagnosis, and treatment of colorectal cancer; for policy decisions that make the most effective colon and rectal cancer prevention and treatment available to all; and for increased awareness that colorectal cancer is preventable, treatable, and beatable.
(703) 548-1225
www.FightcolorectalCancer.org
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National Colorectal Cancer Research Alliance
Co-founded by Katie Couric and Lily Tartikoff, the NCCRA is dedicated to the eradication of colon cancer by harnessing the power of celebrity to promote education, fundraising, research, and early medical screening. The site offers information on screening tests, a health checklist, a factsheet, and information on clinical research.
(800) 872-3000
www.nccra.org
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The Susan Cohan Kasdas Colon Cancer Foundation
The Susan Cohan Kasdas Colon Cancer Foundation hopes to dramatically reduce the death rate of colon cancer throughout the United States and across the world. The foundations aims are to educate everyone about screenings and insure that no individual is unable to access proper screening, providing psychological support for those with the disease and aiding clinical trials and cutting edge research
(410) 244-1778
info@coloncancerfoundation.org
www.coloncancerfoundation.org
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GENERAL CANCER INFORMATION & SUPPORT
American Cancer Society (ACS)
A voluntary organization that offers a variety of services to patients and their families. The ACS also supports research, provides printed materials, and conducts educational programs. Spanish language help available.
(800) ACS-2345 (800-227-2345)
www.cancer.org
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American Institute for Cancer Research (AICR)
Provides information about cancer prevention, particularly through diet and nutrition. They offer a toll-free nutrition hotline, pen pal support network, and funding of research grants. Spanish language publications available.
(800) 843-8114
aicrweb@aicr.org
www.aicr.org
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American Society of Clinical Oncology (ASCO) Online
Contains more than 40,000 pages of information, including: cancer resources on the Internet, finding an oncologist, and up-to-date information about cancer policy issues.
(703) 299-0150
Asco@asco.org
www.asco.org
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Cancer Care, Inc.
A national nonprofit agency that offers free support, information, financial assistance, and practical help to people with cancer and their loved ones. Services are available in person, over the phone, and through the agency's website. Spanish language help available.
(800) 813-HOPE (800-813-4673)
info@cancercare.org
www.cancercare.org
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Cancer Hope Network
The Cancer Hope Network provides individual support to cancer patients and their families by matching them with trained volunteers who have undergone and recovered from a similar cancer experience.
877-HOPENET (877-467-3638)
www.cancerhopenetwork.org
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CanSurmount
Canadian organization affiliated with the Canadian Cancer Society. Offers education and support for patients and family members. Attempts to match volunteers who have survived cancer with patients who are in the hospital. Services provided in English and French.
In Canada, call: 1-888-939-3333; In the US call: (800) ACS-2345
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Coalition of National Cancer Cooperative Groups, Inc.
Provides basic information about cancer clinical trials, a list of available trials offered by seven cooperative groups, and helpful links to patient advocate groups.
(877) 520-4457
www.cancertrialshelp.org
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Corporate Angel Network, Inc. (CAN)
CAN finds free air transportation (on corporate planes) for cancer patients who need medical treatment. Patients must be ambulatory.
(866) 328-1313
info@corpangelnetwork.org
www.corpangelnetwork.org
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Fertile Hope
A nonprofit organization dedicated to helping cancer patients with fertility issues.
1-888-994-4673
www.fertilehope.org
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Lance Armstrong Foundation
The Foundation focuses its activities in the following areas: survivor resources and support, survivorship programs, national advocacy initiatives, scientific and clinical research grants.
(512) 236-8820
www.laf.org
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The Mautner Project for Lesbians with Cancer
Provides support, education, information and advocacy for health issues relating to lesbians with cancer and their families. Help also available in Spanish.
(202) 332-5536
mautner@mautnerproject.org
www.mautnerproject.org
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National Cancer Institute
Provides accurate, up-to-date information on many types of cancer, information on clinical trials, resources for people dealing with cancer, and information for researchers and health professionals. Help also available for the deaf and in Spanish.
(800) 4-CANCER (800-422-6237)
www.cancer.gov
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National Cancer Institute - Spanish Website:
www.cancer.gov/espanol
National Cancer Survivors Day Foundation (NCSD)
National Cancer Survivors Day is the world’s largest cancer survivor event and is celebrated on the first Sunday in June of each year in more than 700 communities throughout North America and elsewhere. A free celebration planning kit is available from the foundation.
(615) 794-3006
ncsd@aol.com
www.ncsdf.org
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National Coalition for Cancer Survivorship (NCCS)
NCCS is a network of groups and individuals that offer support to cancer survivors and their loved ones. It provides information and resources on cancer support‚ advocacy‚ and quality-of-life issues. A section of the NCCS website and a limited selection of publications are available in Spanish.
(877) 622-7937
www.canceradvocacy.org
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National Lymphedema Network, Inc
Cancer organization focusing on Lymphodema. The network publishes a quarterly newsletter, provides referrals, presents a biennial national conference and offers educational materials for purchase.
(800) 541-3259
www.lymphnet.org
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OncoLink
Affiliated with the University of Pennsylvania Cancer Center. A comprehensive website that provides information about specific types of cancer, updates on cancer treatments and news about research advances.
(215) 349-5445
www.oncolink.upenn.edu
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R. A. Bloch Cancer Foundation, Inc.
The foundation matches newly diagnosed cancer patients with trained‚ home-based volunteers who have been treated for the same type of cancer. Informational materials and a list of institutions that offer second opinions also available.
800-433-0464
www.blochcancer.org
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Vital Options International TeleSupport Cancer Network
An organization that facilitates a weekly syndicated call-in cancer talk show linking callers with other patients, long-term survivors, family members, physicians, researchers and therapists. Offers services in English and French.
(800) 477-7666
info@vitaloptions.org
www.vitaloptions.org
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The Wellness Community
Provides free psychological and emotional support to cancer patients and their families. They offer support groups on stress reduction and cancer education workshops‚ nutrition guidance‚ exercise sessions‚ and social events.
(888) 793-WELL (888-793-9355)
help@wellness-community.org
www.thewellnesscommunity.org/
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Cancer.com
Developed by Ortho Biotech Products, Cancer.com is a portal aggregating links to cancer-related Web sites and online tools. The information is organized by topic, and there are special sections for caregivers and healthcare professionals.
www.cancer.com/
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Chemocare.com
Scott Hamilton's website is designed to provide the latest information about chemotherapy to patients and their families, caregivers and friends.
www.chemocare.com
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Cancervive, Inc.
For the past 17 yrears, Cancervive has provided counseling, education and advocacy to cancer patients, family members and health professionals. Our patient education materials (books, documentary videos and games) are being used and valued in every major cancer center.
(800) 4-TO-CURE
cancervivr@aol.com
www.cancervive.org
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Cancer Consultants
Cancer Consultants is dedicated to providing comprehensive prevention and treatment information, up-to-date news, and clinical trials listings for cancer patients and their families.
(208)727-6880
ldubose@cancerconsultants.com
www.cancerconsultants.com
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National Cancer Institute: Clinical Trials at NIH
In depth information on clinical trials
1-888-NCI-1937
ncicssc@mail.nih.gov
http://ccr.cancer.gov/trials/cssc/
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American Association for Cancer Research (AACR)
AACR is the a leading source of information about advances in the causes, diagnosis, treatment and prevention of cancer. By accelerating the growth and spread of new knowledge about cancer, AACR is on the front lines of the quest for prevention and cure.
1-866-423-3965
aacr@aacr.org
www.aacr.org/survivorsandadvocates
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GIST (GASTROINTESTINAL STROMAL TUMOR)
The Life Raft Group
The Life Raft Group is a non-profit organization providing support, through information, education, and innovative research to patients with a rare cancer called GIST (Gastrointestinal Stromal Tumor). Our outreach efforts touch patients, and their doctors, throughout the world.
973-837-9092
pbarckett@liferaftgroup.org
www.liferaftgroup.org/
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GIST Support International
On this site you will find people from around the world who are dealing with GIST, both the experienced and inexperienced, patients and caregivers, nonprofessionals and professionals. Here you will find support, contacts and information for managing life with GIST Cancer.
gsi@gistsupport.org
www.gistsupport.org
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GYNECOLOGICAL CANCER
Gynecologic Cancer Foundation (GCF)
GCF is designed to increase public awareness of ways to prevent, detect and treat gynecological caners and supports innovative research.
(800) 444-4441
gcf@sba.com
www.wcn.org/gcf/
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HOSPICE
Hospice Education Institute
Includes programs such as HospiceLink, which helps patients and their families find support services in their communities. They offer information about hospice and palliative care and can refer cancer patients and their families to local hospice and palliative care programs.
(800) 331-1620
www.hospiceworld.org
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National Hospice and Palliative Care Organization (NHPCO)
The NHPCO is an association of programs that provide hospice and palliative care. Help in Spanish is also available.
(800) 658-8898
www.nhpco.org
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KIDNEY CANCER
Kidney Cancer Association
Supports research‚ offers printed materials about the diagnosis and treatment of kidney cancer‚ sponsors support groups‚ and provides physician referral information.
(800) 850-9132
office@kidneycancerassociation.org
www.kidneycancerassociation.org
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LIVER CANCER
American Liver Foundation
Support and referrals for people with liver cancer and liver diseases.
(800) GO-LIVER
info@liverfoundation.org
www.liverfoundation.org
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About Liver Tumors
A resource for liver patients and concerned persons. This website is an excellent resource that includes FAQ's, definitions, as well as a portal for people to contact physicians and support groups.
(502) 629-3380
info@AboutLiverTumors.com
www.aboutlivertumors.com/
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LUNG CANCER
Alliance for Lung Cancer Advocacy, Support and Education (ALCASE)
ALCASE offers programs designed to help improved the quality of life of people with lung cancer and their families. Programs include education about the disease, psychosocial support, and advocacy about issues that concern lung cancer survivors.
(800) 298-2436
info@alcase.org
www.alcase.org
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American Lung Association
Dedicated to preventing lung disease and promoting lung health. Services also available in Spanish.
(212) 315-8700
info@lungusa.org
www.lungusa.org
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MESOTHELIOMA
Mesothelioma Information and Resource Group
The Mesothelioma Information and Resource Group [MIRG] is an organization created to assist patients, family, friends and loved ones in learning about mesothelioma and other asbestos-related injuries. It is the aim of MIRG to provide information about the disease, its causes, its treatment and its personal and legal impact.
1-888-802-6376
info@mirg.org
www.mirg.org/
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Life with Mesothelioma
Learn more about this disease at this informative site.
1-800-780-2686
www.lifewithmesothelioma.com
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MYELOMA, LEUKEMIA & LYMPHOMA
International Myeloma Foundation (IMF)
Supports education, treatment, and research for multiple myeloma. They provide a toll-free hotline, seminars, and educational materials for patients and their families. Assistance is provided in many languages.
(800) 452-CURE (800-452-2873)
TheIMF@myeloma.org
www.myeloma.org
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The Leukemia and Lymphoma Society
The goal of the society is to find cures for leukemia, lymphoma, Hodgkin's disease, and multiple myeloma and to improve the quality of life of patients and their families. The society provides patient financial aid for specified treatment expenses and transportation, family support groups, First Connection (a professionally supervised peer support program), referrals and scholl re-rentry materials. Help is also available in Spanish, French, Portuguese, and Japanese.
(800) 955-4572
www.leukemia-lymphoma.org
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Lymphoma Research Foundation (LRF)
LRFA funds research and provides educational information on lymphoma. They offer a helpline for general information on lymphoma, as well as referrals to othe resources, oncologists, clinical trials and support groups. A buddy program is available to match newly diagnosed patients with other lymphoma patients who have coped with the disease.
(800) 500-9976
www.lymphoma.org
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The Multiple Myeloma Research Foundation (MMRF)
Supports research grants and professional and patient symposia on multiple myeloma and related blood cancers. MMRF publishes a quarterly newsletter, and provides referrals and information packets free of charge to patients and family members.
(203) 972-1250
themmrf@themmrf.org
www.multiplemyeloma.org
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Lymphatic Research Foundation
The Lymphatic Research Foundation's mission is to advance research of the lymphatic system and to find the cause of and cure for lymphatic diseases, lymphedema, and related disorders.
(516) 625-9675
lrf@lymphaticresearch.org
www.lymphaticresearch.org
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ORAL, HEAD & NECK CANCERS
International Association of Laryngectomees (IAL)
An association of over 230 laryngectomee clubs. Clubs provide pre- and post-operation visits to larryngee cancer patients and continuing support education for laryngectomees and families.
(866) IAL-FORU (866-425-3678)
IAL@larynxlink.com
www.larynxlink.com
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Support for People with Oral and Head and Neck Cancers, Inc. (SPOHNC)
Offers a program of support and information addressing the emotional, psychological and humanistic needs of oral and head and neck cancer patients.
(800) 377-0928
info@spohnc.org
www.spohnc.org
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Mouth Cancer Foundation
A not-for-profit Internet portal that aims to help patients and health professionals find free information on mouth, head & neck cancers easily. It provides direct links to the relevant sections of existing cancer websites and includes patient stories as well as an active message board, which acts as an an easily accessible online support group The website includes first hand patient accounts of their experiences, has sections on Treatment, Complications, Cheerful Help, Spiritual Help, HPV Risks, Tobacco Risks, etc.
0845 46 47
info@mouthcancerfoundation.org
www.mouthcancerfoundation.org
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OTHER
Sarcoma Alliance
Strives to improve the lives of Sarcoma patients through guidance, education support.
415-381-7236
info@sarcomaalliance,org
www.sarcomaalliance.org
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CarePages
CarePages are patient websites that deliver emotional support to patients and families by making it easy for them to stay in touch during a hospital stay or any time when care giving is needed.
773.348.0720
support@carepages.com
www.carepages.com
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Shop Well With You
Shop Well with You is a 501(c)3 not-for-profit organization that helps women with a history of cancer improve their quality of life by using clothing as a creative means towards wellness.
(800) 799-6790
info@shopwellwithyou.org
www.shopwellwithyou.org
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OVARIAN CANCER
CONVERSATIONS: The International Ovarian Cancer Connection
Publisher of CONVERSATIONS! The International Newsletter for Those Fighting Ovarian Cancer, a free monthly newsletter providing hope, humor, support and information about treatment options and coping tips. Survivor-to-fighter matching service available.
(806) 355-2565
www.ovarian-news.org
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National Ovarian Cancer Coalition (NOCC)
NOCC raises awareness about ovarian cancer and promotes education about the disease. They also offer support groups, a database of gynecologic oncologists searchable by state, and educational materials.
(888) OVARIAN (888-682-7426)
www.ovarian.org
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Ovarian Cancer National Alliance (OCNA)
Works to increase public and professional understanding of ovarian cancer and to advocate for research. The Alliance distributes materials and sponsors an annual advocacy conference for survivors and families.
(202) 331-1332
ocna@ovariancancer.org
www.ovariancancer.org
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The Ovarian Cancer Research Fund (OCRF)
Dedicated to advancing research by underwriting investigations to find techinques for early detection and to aid in the development of new therapists. Raises awareness through educational outreach programs, awareness projects, including videos and resource materials.
(800) 873-9569
info@ocrf.org
www.ocrf.org
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PANCREATIC CANCER
Pancreatic Cancer Action Network (PanCAN)
PanCAN, a national nonprofit advocacy organization, works to focus national attention on the need to find a cure for pancreatic cancer by providing advocacy, awareness and education to patients and professionals.
(877) 2-PANCAN (877-272-6226)
info@pancan.org
www.pancan.org
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The Lustgarten Foundation for Pancreatic Cancer
516-803-2308
lsasso@cablevision.com
www.lustgartenfoundation.org
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PATIENT ADVOCACY
Patient Advocate Foundation (PAF)
The PAF provides education‚ legal counseling‚ and referrals to cancer patients and survivors concerning managed care‚ insurance‚ financial issues‚ job discrimination‚ and debt crisis matters.
(800) 532-5274
help@patientadvocate.org
www.patientadvocate.org
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PROSTATE CANCER
Men's Cancer Resource Group
A support network that runs a 24-hour information line serving prostate cancer survivors and concerned professionals.
(800) 227-2345
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National Prostate Cancer Coalition
A grassroots advocacy organization seeking to increase prostate cancer awareness, enhance outreach and advocate for research funs and better detection strategies.
(202) 463-9455
info@pcacoalition.org
www.4npcc.org
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US TOO! International, Inc.
A prostate cancer support group organization. Goals of US TOO! are to educate men newly diagnosed with prostate cancer, offer support groups, and provide the latest information about treatment for this disease.
(800) 80-US TOO (800-808-7866)
dorothy@ustoo.com
www.ustoo.org
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SKIN CANCER
The Skin Cancer Foundation
Works to increase public awareness of the importance of taking protective measures against the damaging rays of the sun and teach people how to recognize early signs of skin cancer. They conduct public and medical education programs to help reduce skin cancer.
(800) SKIN-490 (800-754-6490)
info@skincancer.org
www.skincancer.org
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About Melanoma
A resource for melanoma patients and other concerned persons, this site is a definitive resource, providing in-depth definitions, an extensive FAQ and a portal through which to contact physicians and experts.
502-629-3380
info@AboutMelanoma.com
www.aboutmelanoma.com
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Melanoma International Foundation
The Melanoma International Foundation was established by people genuinely dedicated to battling melanoma on all fronts. Each board member has experienced melanoma firsthand: either from being a survivor or losing a loved one to the disease. The foundation is on the cutting edge of creating and supporting the most effective programs for the prevention, early detection, and treatment of melanoma.
866-463-6663 or 610-942-3432
info@melanomaintl.org
www.melanomaintl.org
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TESTICULAR
The Testicular Cancer Resource Center
A website devoted to raising public awareness and education patients about diagnosis and treatment options. Features self-exam instructions, dictionary, e-mail support and questions to ask your doctor.
dougbank@alum.mit.edu
http://tcrc.acor.org/
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THYMIC
Foundation for Thymic Cancer Research
Offers information on research, clinical trials, patient stories and a provider database.
info@thymic.org
www.thymic.org
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THYROID
ThyCa: Thyroid Cancer Survivors Association, Inc.
A network of services that link thyroid cancer survivors and health care professionals around the world, the website is maintained by thyroid cancer survivors.
(877) 588-7904
thyca@thyca.org
www.thyca.org
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