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Resources This is a resource directory for Gildas Club family and friends. Click on one of the topics listed to jump to specific resource information. Bone Marrow Transplants & Donors Brain Tumors Breast Cancer Cancer and Careers Cancer Caregivers Support Group Children & Young Adults Colon Cancer General Cancer Information & Support Gynecological Cancer Hospice Kidney Cancer Liver Cancer Lung Cancer Mesothelioma Myeloma, Leukemia & Lymphoma Oral, Head & Neck Cancers Other types of cancer Ovarian Cancer Pancreatic Cancer Patient Advocacy Prostate Cancer Skin Cancer Testicular Thyroid
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
BRAIN TUMORS National Brain Tumor Society Brings together brain tumor research and supportive patient services. It offers hope to patients, families, and caregivers during every stage of the treatment journey. (800) 770 8287 E-mail: info@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 www.abta.org
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 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 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 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 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
CANCER AND CAREERS
Cancer and Careers Provides a comprehensive website and free publications in English and Spanish as well as a series of support groups and educational seminars for employees with cancer, their employers, coworkers and healthcare providers. www.cancerandcareers.org
CANCER CAREGIVERS SUPPORT GROUP
The Cancer Caregivers Support Group Presented by Froedtert and The Medical College of Wisconsin is for family members caring for a loved one diagnosed with any type of cancer. The group meets the 4th Tuesday of every month, 5:30-7:30 pm, Clinical Cancer Center at Froedtert Hospital in Conference Room J, Lobby Level. Questions? Call (414) 805-3666 or (800) 272-3666. Click here for a flyer with additional information.
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 Kids Konnected Provides friendship, education, and support to kids who have a parent with cancer. (800) 899-2866 info@kidskonnected.org www.kidskonnected.org 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 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 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 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
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 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
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 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 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 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 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 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 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 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 Fertile Hope A nonprofit organization dedicated to helping cancer patients with fertility issues. 1-888-994-4673 www.fertilehope.org 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 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 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 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 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 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 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 Oral Mucositis MouthsMadeGood.com website provides information and advice for cancer therapy patients about how to prevent and treat the common side effect Oral Mucositis. www.mouthsmadegood.com 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 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 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 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 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 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
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
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 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
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
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 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
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 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
MESOTHELIOMA
The Mesothelioma Center Offering the most comprehensive and current information on asbestos exposure and a complete list of symptoms of mesothelioma. www.asbestos.com
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 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 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 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
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 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
OTHER TYPES OF CANCER 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
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 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 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 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
PANCREATIC CANCER Pancreatic Cancer Action Network (PanCAN) A nonprofit advocacy organization that educated health professionals and the general public about pancreatic cancer to increase awareness of the disease. Information about support networks, clinical trials, and reimbursement for carse also available. (877) 2-PANCAN (877-272-6226) info@pancan.org www.pancan.org The Lustgarten Foundation for Pancreatic Cancer 516-803-2308 lsasso@cablevision.com www.lustgartenfoundation.org
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
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 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 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
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
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
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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