Diagnosis Specific Resources

This page serves as a resource directory for Gilda’s Club family and friends. The following resources are for informational purposes only. Gilda’s Club Delaware Valley is not responsible for any of the information on these web sites.

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 informtion 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
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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
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Blood and Marrow Transplant Information Network
Patient-friendly handbooks and a quarterly newsletter about transplantation. Links patients with survivors who can provide emotionaly support. Maintains an online Directory of Transplant Centers in the US and Canada, and online Directory of Drugs used during transplant, and an online Resource Directory. Offers attorney referrals for patients who have insurance disputes. Comprehensive web site.
(888) 597-7674
help@bmtinfonet.org
www.bmtinfonet.org
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BRAIN TUMORS

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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
www.abta.org
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National Brain Tumor Society
Brings together brain tumor research and supportive patient services. They offer hope to patients, families, and caregivers during every stage of the treatment journey.
(800) 770-8287
info@braintumor.org
www.braintumor.org
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The Guardian Brian 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
ww5.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.
uhn.info@uhn.on.cam
www.uhn.ca/patient/health_info/references/breastcancer_booklet.asp
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Treatments

Alternative Medicine

 

Mental and Emotional Support

 

Prevention

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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-on-one with survivors and caregivers.
(877) 422-2030
gailrh@mindspring.com
www.scalliance.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, fund raising, 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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Treatments

Alternative Medicine

Mental and Emotional Support

Prevention

 

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
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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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Treatments

 

Alternative Medicine

 

Mental and Emotional Support

 

Prevention

MESOTHELIOMA

Mesothelioma Information

This form of cancer is diagnosed in approximately 2,000 to 3,000 Americans every year.  In most cases, mesothelioma is caused by exposure to asbestos and it can take anywhere from 20 to 50 years to develop after initial exposure. Luckily, Mesothelioma Prognosis offers detailed information regarding symptoms, disease types and methods of treatment.

http://www.mesotheliomaprognosis.org/

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Mesothelioma Informationand 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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Pleural Mesothelioma
Our website has the most up to date and comprehensive information about Pleural Mesothelioma on the web today. With information ranging from a complete list of symptoms, to treatment options, and steps to take after a diagnosis.

(800)656 – 6031

info@pleuralmesothelioma.com
http://www.pleuralmesothelioma.com

 

ResearchMesotheliomaCancer.com
Learn more about this disease at this informative site.
www.ResearchMesotheliomaCancer.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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Treatments

Alternative Medicine

Mental and Emotional Support

Prevention

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.theial.com/ial/
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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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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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Treatments

Alternative Medicine

Mental and Emotional Support

Prevention

 

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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SARCOMA

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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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
www.acor.org/diseases/tc
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THYMIC

www.thymic.org (Foundation for Thymic Cancer Research)
thymic@yahoogroups.com (ongoing conversation with thymoma & thymic carcinoma patients and their families)
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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