Breast Cancer RESOURCE GUIDE A collection of websites that provide information and support for patients with breast cancer and the oncology professionals who treat them. Sponsored by Novartis Pharmaceuticals Corporation I’M LIVING MY LIFE FEELINGS WHAT’S RIGHT FOR ME OPTIONS I’M NOT GIVING UP CREATE A PLAN TOGETHER UNCERTAINTY MY BREAST CANCER IS NOT EARLY STAGE. WHERE CAN I GET THE HELP I NEED? If you have advanced or metastatic breast cancer, go to advancedbreastcancercommunity.org. There’s a lot on your mind, whether you’re newly diagnosed or have been living with your disease for a while. You have decisions to make, options to consider. But your breast cancer is not early stage cancer, and you may not be able to find help in the usual places. You have your doctors, but you need other support too. So where can you turn? You’ll find the information and inspiration you’re looking for at advancedbreastcancercommunity.org. It’s a place where you can be counted, a place that helps bring much-needed awareness to metastatic breast cancer and those living with this disease. Sign up and join the others who have already been counted Learn important information about metastatic disease Find support, resources, and information whenever you need them FRIENDS FAMILY SUPPORT OTHERS WHO’VE BEEN THERE Join us at advancedbreastcancercommunity.org and be counted today. Novartis Pharmaceuticals Corporation East Hanover, New Jersey 07936-1080 © 2012 Novartis 8/12 MDA-1047319 A Guide to Support Services Individuals with metastatic breast cancer Alamo Breast Cancer Foundation www.alamobreastcancer.org 210-692-9535 [email protected] Individuals with all types of breast cancer American Cancer Society www.cancer.org 1-800-227-2345 E-mail via website Individuals affected by all types of cancer Avon Foundation for Women Breast Health Outreach Program www.avonbhop.org 212-244-5368 [email protected] Medically underserved individuals with breast cancer BrainMetsBC.org www.brainmetsbc.org E-mail via website Patients and their families impacted by metastatic breast cancer Breastcancer.org www.breastcancer.org E-mail via website Individuals with all types of breast cancer BreastCancerTrials.org www.breastcancertrials.org 415-476-5777 [email protected] Breast cancer patients considering clinical trials Breast Cancer Research Foundation www.bcrfcure.org 1-866-346-3228 [email protected] Healthcare professionals and individuals affected by all types of breast cancer and interested in research CancerCare www.cancercare.org 1-800-813-4673 [email protected] Patients, loved ones, and physicians affected by all types of cancer Cancer.Net American Society of Clinical Oncology www.cancer.net 1-888-651-3038 [email protected] Patients and loved ones affected by all types of cancer Cancer and Careers www.cancerandcareers.org 212-685-5955 [email protected] Patients, coworkers, and physicians affected by all types of cancer ral So W cial eb Me Su dia pp / ort Ge S nera up l C po an rt ce r Advanced Breast Cancer Community www.advancedbreastcancercommunity.org 1-888-669-6682 E-mail via website ltu Individuals with metastatic breast cancer Cu AdvancedBC.org www.advancedbc.org E-mail via website A Mdvan eta ced sta / tic Who It Serves Re gio na l Organization Na ti on al There are many sources of support available to assist you as you manage your decisions regarding a diagnosis of breast cancer. Please use this checklist as a guide to determine which organizations fit your needs. 3 CaringBridge www.caringbridge.org 651-789-2300 E-mail via website Patients, family, and friends affected by all types of cancer CopingUniversity.com www.copinguniversity.com 1-866-725-7877 E-mail via website Individuals affected by all types of cancer Día de la Mujer Latina www.diadelamujerlatina.org 281-489-1111 [email protected] Latina women, including medically underserved, with all types of breast cancer Inspire www.inspire.com 1-800-945-0381 [email protected] Patients, loved ones, and caregivers affected by all types of cancer Intercultural Cancer Council www.iccnetwork.org 713-798-4614 [email protected] Racial, ethnic, and medically underserved cancer patients Linda Creed Foundation www.lindacreed.org 1-877-992-7333 [email protected] Individuals and loved ones in the greater Philadelphia area Living Beyond Breast Cancer www.lbbc.org 610-645-4567 [email protected] Individuals with all types of breast cancer Men Against Breast Cancer www.menagainstbreastcancer.org 1-866-547-6222 [email protected] Male caregivers affected by all types of breast cancer Metastatic Breast Cancer Network www.mbcn.org 1-888-500-0370 [email protected] Individuals affected by metastatic breast cancer METAvivor Research and Support, Inc www.metavivor.org 410-353-3733 [email protected] Individuals affected by metastatic breast cancer MyLifeLine.org www.mylifeline.org 720-883-8715 [email protected] Patients and caregivers affected by all types of cancer National Breast Cancer Coalition www.breastcancerdeadline2020.org 1-800-622-2838 E-mail via website Policy makers, researchers, and advocates for all types of breast cancer ral So W cial eb Me Su dia pp / or t Ge n S era up l C po an rt ce r Breast cancer patients and survivors in the Washington, DC area ltu Capital Region Action Against Breast Cancer! www.craab.org [email protected] Cu Patients and loved ones affected by all types of cancer A Mdvan eta ced sta / tic Cancer Support Community www.cancersupportcommunity.org 1-888-793-9355 [email protected] Re gio na l Who It Serves Na ti on al 4 Organization National Coalition for Cancer Survivorship www.canceradvocacy.org 301-650-9127 [email protected] Patients, caregivers, and survivors affected by all types of cancer Nueva Vida www.nueva-vida.org 1-866-986-8432 [email protected] Latina women, including medically underserved, with all types of breast cancer Patient Advocate Foundation www.patientadvocate.org 1-800-532-5274 [email protected] Patients with serious diseases who are medically underserved Pennsylvania Breast Cancer Coalition www.pabreastcancer.org 1-800-377-8828 [email protected] Breast cancer patients and families, including medically underserved, in Pennsylvania SHARE-Self-Help-for Women With Breast or Ovarian Cancer www.sharecancersupport.org 1-866-891-2392 Individuals affected by breast cancer or ovarian cancer Sharsheret www.sharsheret.org 1-866-474-2774 [email protected] Jewish breast cancer or ovarian cancer patients and those at risk Sisters Network Inc www.sistersnetworkinc.org 1-866-781-1808 [email protected] African American women, including medically underserved, with all types of breast cancer Susan G. Komen for the Cure ww5.komen.org 1-877-465-6636 E-mail via website Individuals affected by all types of breast cancer Triple Negative Breast Cancer Foundation www.tnbcfoundation.org 1-877-880-8622 [email protected] Patients and caregivers affected by triple negative breast cancer Virginia Breast Cancer Foundation www.vbcf.org 1-800-345-8223 Individuals in Virginia with all types of breast cancer Young Japanese Breast Cancer Network bcnetwork.org [email protected] Japanese women living in the United States who have breast cancer Young Survival Coalition www.youngsurvival.org 1-877-972-1011 E-mail via website Young patients and caregivers affected by all types of breast cancer ral So W cial eb Me Su dia pp / or t Ge S nera up l C po an rt ce r Individuals affected by all types of cancer ltu National Cancer Institute www.cancer.gov 1-800-422-6237 E-mail via website Cu Patients affected by all types of breast cancer A Mdvan eta ced sta / tic National Breast Cancer Foundation, Inc www.nationalbreastcancer.org E-mail via website Re gio na l on al Who It Serves Na ti Organization 5 Breast Cancer Support Groups Many organizations offer support in more than one category provided below. Please use the Support Services checklist on pages 3-5 to help you determine which organizations fit your needs. Note - descriptions on the following pages are provided by the organizations. Cultural National 7Avon Foundation for Women Breast Health Outreach Program Breastcancer.org 8 BreastCancerTrials.org Living Beyond Breast Cancer 9 Men Against Breast Cancer 18 Día de la Mujer Latina Intercultural Cancer Council The Breast Cancer Research Foundation 12Triple Negative Breast Cancer Foundation Young Survival Coalition Capital Region Action Against Breast Cancer! 20Sisters Network Inc Young Japanese Breast Cancer Network General cancer support 21American Cancer Society Project Manager Jaclyn Pallotti Art Director Ray Pelesko CancerCare Vice President, Integrated Special Projects Group David Lepping Associate Publisher Erik Lohrmann Director of Sales Mike Hennessy, Jr 22Cancer.Net National Accounts Manager Robert Goldsmith National Accounts Representative Nicole Jussen Cancer and Careers 23Cancer Support Community Sales & Marketing Coordinator Megan O’Connell CopingUniversity.com National Coalition for Cancer Survivorship Digital Media Vice President, Digital Media Jung Kim Web Editor Silas Inman 25Patient Advocate Foundation Operations & Finance Group Director, Circulation and Production John Burke social media/Web support Pennsylvania Breast Cancer Coalition ADVANCED/METASTATIC Project Director Donna Bonura Sales & Marketing 14Linda Creed Foundation 15 Virginia Breast Cancer Foundation Senior Vice President, Clinical and Scientific Affairs Jeff D. Prescott, PharmD, RPh Quality Assurance Editor David Allikas Sharsheret 24National Cancer Institute 13Alamo Breast Cancer Foundation Editorial & Production Regional Jack Lepping Assistant Editor Jeanne Linke 10National Breast Cancer Foundation, Inc 11 Susan G. Komen for the Cure President 19Nueva Vida National Breast Cancer Coalition SHARE-Self-Help for Women With Breast or Ovarian Cancer www.OncLive.com Director of Operations Thomas J. Kanzler 25CaringBridge Controller Jonathan Fisher, CPA 26The Inspire Advanced Breast Cancer Support Community Assistant Controller Leah Babitz, CPA Corporate MyLifeLine.org Cancer Foundation 15AdvancedBC.org Chairman/Chief Executive Officer/ President Mike Hennessy 16Advanced Breast Cancer Community Chief Operating Officer Tighe Blazier Chief Financial Officer Neil Glasser, CPA/CFE BrainMetsBC.org 17Metastatic Breast Cancer Network METAvivor Research and Support, Inc Executive Vice President, Executive Director of Education Judy V. Lum, MPA Vice President, Group Creative Director Jeff Brown Bringing the Oncology Community Together Office Center at Princeton Meadows Bldg. 300 • Plainsboro, NJ 08536 (609) 716-7777 Copyright © 2012 Intellisphere, LLC. All rights reserved. Avon Foundation for Women Breast Health Outreach Program National Breast Cancer Support Groups www.avonbhop.org ADDRESS: 505 Eighth Avenue Suite 1901 New York, NY 10018 CONTACT INFO: Phone: 212-244-5368 E-mail: [email protected] The mission of the Avon Foundation for Women Breast Health Outreach Program (BHOP) is to link medically underserved women to breast health education and screening services. The foundation understands that low-income, underinsured, and other marginalized populations often need targeted, customized approaches to help them obtain regular mammograms and clinical breast exams. Resource Checklist Screening information Grant applications Abstracts Additional resources Breastcancer.org www.breastcancer.org Breastcancer.org was founded in 1999 by Marisa Weiss, MD, a nationally renowned oncologist specializing in breast cancer. The organization has a mission to help women and their loved ones make sense of the complex medical and personal information about the disease, enabling them to make the best decisions for their lives. All content on the Breastcancer.org website is reviewed by a professional advisory board for accuracy. ADDRESS: 7 East Lancaster Avenue 3rd Floor Ardmore, PA 19003 CONTACT INFO: E-mail: Through website Resource Checklist Advanced/metastatic breast cancer information Free booklets/brochures Chat rooms and forums Stories of hope Research news Day-to-day matters Practical tips Extensive breast cancer information Available in Spanish 7 National BreastCancerTrials.org www.breastcancertrials.org BreastCancerTrials.org (BCT) encourages individuals affected by breast cancer to consider clinical trials as a routine option for care. To help match patients to appropriate trials, BCT connects with individuals through online profiles and provides patients with accurate information regarding well-suited trials. Resource Checklist ADDRESS: 3450 California Street San Francisco, CA 94118 CONTACT INFO: Phone: 415-476-5777 E-mail: [email protected] Advanced/metastatic breast cancer information Browse trials feature Personalized clinical trials matching service Resources for working with healthcare professionals Newsletter Living Beyond Breast Cancer www.lbbc.org Living Beyond Breast Cancer (LBBC) is a national education and support organization dedicated to improving quality of life by encouraging patients to take an active role in their ongoing recovery or management of breast cancer. The LBBC’s website offers specialized programs and services that don’t discriminate on the basis of educational background, social support, or financial means. ADDRESS: 354 West Lancaster Avenue Suite 224 Haverford, PA 19041 CONTACT INFO: Phone: 610-645-4567 484-708-1550 E-mail: [email protected] 8 Resource Checklist Advanced/metastatic breast cancer information Downloadable booklets/brochures Insight newsletter Survivors’ helpline Tips for living Clinical trials information Blog National Men Against Breast Cancer www.menagainstbreastcancer.org Men Against Breast Cancer (MABC) provides support services to educate and empower men to be effective caregivers when breast cancer strikes a woman in their life. MABC also targets and mobilizes men to become advocates in the fight to eradicate breast cancer as a life-threatening disease. Resource Checklist ADDRESS: PO Box 150 Adamstown, MD 21710 CONTACT INFO: Phone: 1-866-547-6222 E-mail: [email protected] Information on male breast cancer Find a Friend support service Resource library Educational materials Available in Spanish National Breast Cancer Coalition www.breastcancerdeadline2020.org ADDRESS: 1101 17th Street, NW Suite 1300 Washington, DC 20036 CONTACT INFO: Phone: 1-800-622-2838 202-296-7477 E-mail: Through website The National Breast Cancer Coalition (NBCC) has become a powerful voice, as it has created new partnerships, collaborations, research funding opportunities, and avenues for access to quality care. The NBCC’s Breast Cancer Deadline 2020 is an initiative for all for policy makers, researchers, breast cancer advocates, and other stakeholders to end the disease by 2020. NBCC encourages those concerned about breast cancer to become advocates for action and change. Resource Checklist Advanced/metastatic breast cancer information Scientific breast cancer news Glossary of terms Explore breast cancer issues Facts and figures Available in Spanish 9 National National Breast Cancer Foundation, Inc www.nationalbreastcancer.org ADDRESS: 2600 Network Boulevard Suite 300 Frisco, TX 75034 CONTACT INFO: E-mail: Through website The National Breast Cancer Foundation’s (NBCF) mission is to save lives through early detection and to provide mammograms for those in need. NBCF’s mission includes increasing awareness through education, providing diagnostic breast care services for those in need, and providing nurturing support services. Please visit NBCF’s additional website, beyondtheshock.com, for educational resources for women and their families. Resource Checklist Advanced/metastatic breast cancer information Online community Newsletter Inspirational stories Educational videos Extensive breast cancer information SHARE-Self-Help for Women With Breast or Ovarian Cancer www.sharecancersupport.org ADDRESS: 1501 Broadway Suite 704A New York, NY 10036 CONTACT INFO: Phone: 1-866-891-2392 212-719-0364 10 SHARE encourages women, their families, and their friends to join with others to create a community which offers them the opportunity to receive and exchange information, support, strength, and hope. SHARE provides telephone support. Its toll-free hotline is available in English, Spanish, and 10 other languages. SHARE’s other free services include support groups, educational programs, and advocacy activities. SHARE’s work focuses on empowerment, education, and advocacy to bring about better health care, an improved quality of life, and a cure for these diseases. Resource Checklist Advanced/metastatic breast cancer information Toll-free multilingual helpline Family and friends blog Survivor stories Videos Available in Spanish ww5.komen.org Susan G. Komen for the Cure is currently the boldest community fueling the best science and making the biggest impact in the fight against breast cancer. Since 1982, the organization has played a critical role in every major advance in the fight against breast cancer. Its contributions include improvements in detection and effective treatments, and more hope, research, and breast cancer survivors. National Susan G. Komen for the Cure Resource Checklist ADDRESS: 5005 LBJ Freeway Suite 250 Dallas, TX 75244 CONTACT INFO: Phone: 1-877-465-6636 E-mail: Through website Advanced/metastatic breast cancer information Website resource links Helpline Healthy recipes Insurance and financial information Mammogram/CBE reminder Message boards Blog Available in Spanish The Breast Cancer Research Foundation www.bcrfcure.org ADDRESS: 60 East 56th Street 8th Floor New York, NY 10022 CONTACT INFO: Phone: 1-866-FINDACURE 646-497-2600 E-mail: [email protected] The mission of The Breast Cancer Research Foundation (BCRF) is to achieve prevention and a cure for breast cancer in our lifetime by providing critical funding for innovative clinical and translational research at leading medical centers worldwide and increasing public awareness about good breast health. If not for BCRF, many facts about the genetic basis of breast cancer would not be known, the link between exercise, nutrition and breast cancer risk would not be established, and the rate of mortalities would not continue its downward curve. Resource Checklist Advanced/metastatic breast cancer information Breast health library Information on breast cancer research Resources for clinical trials Available in Spanish 11 National Triple Negative Breast Cancer Foundation www.tnbcfoundation.org ADDRESS: PO Box 204 Norwood, NJ 07648 CONTACT INFO: Phone: 1-877-880-8622 646-942-0242 E-mail: [email protected] The Triple Negative Breast Cancer Foundation raises awareness about triple negative breast cancer (TNBC), a subtype of breast cancer. The foundation’s mission is to raise awareness about TNBC and to support scientists and researchers in their efforts to determine the definitive causes of triple negative breast cancer so that effective detection, diagnosis, prevention, and treatment can be pursued and achieved. Resource Checklist Downloadable resources Spotlight stories Online community Helpline Clinical trials matching service Young Survival Coalition www.youngsurvival.org Young Survival Coalition (YSC) was founded by 3 young women all diagnosed with breast cancer before age 35. These women saw the need for better information, support, and research for young women facing breast cancer. YSC is dedicated to the critical issues unique to young women who are diagnosed with breast cancer. The YSC website offers resources, connections, and outreach to help women feel supported, empowered, and hopeful. ADDRESS: 61 Broadway Suite 2235 New York, NY 10006 CONTACT INFO: Phone: 1-877-972-1011 646-257-3000 E-mail: Through website 12 Resource Checklist Advanced/metastatic breast cancer information Newsroom Online community Blog Extensive breast cancer information Information for caregivers Information for health care professionals Survivor stories Affiliate matching service www.alamobreastcancer.org Regional Alamo Breast Cancer Foundation Located in San Antonio, Texas, the Alamo Breast Cancer Foundation is a nonprofit volunteer organization that hopes to end breast cancer by assisting patients, informing policy makers, and expanding knowledge through education and community outreach programs. Resource Checklist ADDRESS: PO Box 780067 San Antonio, TX 78278 CONTACT INFO: Phone: 210-692-9535 E-mail: [email protected] Listing of San Antonio support groups Clinical trials information Survivor stories Helpline Glossary of terms Local stores offering breast cancer supplies Capital Region Action Against Breast Cancer! www.craab.org Capital Region Action Against Breast Cancer! (CRAAB!) was created to make the eradication of breast cancer a priority. Through education and advocacy efforts, the organization is an active, independent voice throughout the Albany, NY area in the fight against breast cancer. CONTACT INFO: E-mail: [email protected] Resource Checklist Newsletters Breast cancer articles Free workshops Free classes Additional resources 13 Regional Linda Creed Foundation www.lindacreed.org Linda Creed was the first local organization to address breast cancer as a serious and widespread disease threatening the lives of women living in the greater Philadelphia area. Linda Creed encourages women and their families to talk about breast cancer, learn about it, and take control of their health and their lives. Resource Checklist ADDRESS: PO Box 40607 Philadelphia, PA 19107 CONTACT INFO: Phone: 1-877-992-7333 215-564-3700 E-mail: [email protected] Free mammography screening schedule Medical care assistance Extensive breast cancer information Clinical trials information Pennsylvania Breast Cancer Coalition www.pabreastcancer.org The PA Breast Cancer Coalition (PBCC) represents, supports, and serves breast cancer survivors and their families in Pennsylvania through educational programming, legislative advocacy, and breast cancer research grants. The PBCC is a statewide nonprofit organization that creates the hope of a brighter tomorrow by providing action and information for women with breast cancer. ADDRESS: 344 North Reading Road Ephrata, PA 17522 CONTACT INFO: Phone: 1-800-377-8828 717-721-2580 E-mail: [email protected] 14 Resource Checklist Find a support group service Survivor stories Free online course for nurses, social workers, and advocates Patient resources Blog Newsletter www.vbcf.org Regional Virginia Breast Cancer Foundation The Virginia Breast Cancer Foundation (VBCF) is an organization committed to the eradication of breast cancer through education and advocacy. Its goal is making the elimination of breast cancer a state and national priority, to advocate for the collective needs of people affected by breast cancer, and to educate all Virginians on the truth about breast cancer. CONTACT INFO: Phone: 1-800-345-8223 804-285-1200 Resource Checklist Blog Order free literature Find a support group service Newsletters Legal resources Insurance resources AdvancedBC.org www.advancedbc.org The goal of AdvancedBC.org is to empower women and their families to forge more effective partnerships with their medical team. AdvancedBC.org gathers a collection of important resources and places them on the organization’s website to provide readers with evidence-based information. ADVANCED/METASTATIC ADDRESS: 5004 Monument Avenue Suite 102 Henrico, VA 23230 Resource Checklist CONTACT INFO: E-mail: Through website Advanced/metastatic breast cancer information Information about standard treatments Free resources Clinical trials information List of helpful products and remedies Research information for healthcare professionals Extensive list of support groups and resources Financial assistance information 15 ADVANCED/METASTATIC Advanced Breast Cancer Community www.advancedbreastcancercommunity.org Sponsored by Novartis ADDRESS: Novartis 1 Health Plaza East Hanover, NJ 07936 CONTACT INFO: Phone: 1-888-669-6682 E-mail: Through website Specific to the different physical and emotional needs of advanced breast cancer patients, the Advanced Breast Cancer Community is a compilation of several advocacy organizations that have partnered with Novartis to help raise awareness about advanced breast cancer. Advanced Breast Cancer Community’s mission is to recognize those living with advanced breast cancer and their caregivers, supporters, friends, and family members. Resource Checklist Advanced/metastatic breast cancer information Listing of advocacy organizations Online support community Financial support resources Hotlines Treatment overview News BrainMetsBC.org www.brainmetsbc.org BrainMetsBC.org is a resource for breast cancer patients with brain metastases and their families, as well as anyone interested in learning more about brain and other central nervous system metastases of metastatic breast cancer. The website is medically reviewed, and is a source for the latest information about this form of the disease. Resource Checklist CONTACT INFO: E-mail: Through website 16 Advanced/metastatic breast cancer information Personal stories Doctor’s corner Clinical trials information Treatment resources Available in Spanish www.mbcn.org ADDRESS: PO Box 1449 New York, NY 10159 CONTACT INFO: Phone: 1-888-500-0370 E-mail: [email protected] The Metastatic Breast Cancer Network (MBCN) dedicates its work to the unique concerns of women and men living with metastatic breast cancer. Founded by 2 advanced breast cancer patients who felt isolated from their support groups, MBCN was created with a mission to develop awareness of metastatic breast cancer by putting a public face on the metastatic experience. MBCN strives to help those living with metastatic breast cancer be their own best advocate through education. MBCN helps patients cope by providing them with information regarding better treatments. ADVANCED/METASTATIC Metastatic Breast Cancer Network Resource Checklist Advanced/metastatic breast cancer information Order brochures Tips Questions for your physician Clinical trials information Support groups Drug information METAvivor Research and Support, Inc www.metavivor.org ADDRESS: 1783 Forest Drive #184 Annapolis, MD 21401 CONTACT INFO: Phone: 410-353-3733 E-mail: [email protected] Run entirely by volunteers, METAvivor’s mission is to end death caused by metastatic breast cancer. The organization provides support options to those impacted by the disease while they continue working to increase awareness and funding toward current and future research. Ultimately, this organization hopes research will help transition metastatic breast cancer from a terminal disease to a controlled, permanently survivable condition, thus offering a decent quality of life for patients. Resource Checklist Advanced/metastatic breast cancer information Blog Statistics Support programs META Book Nook program Research news 17 cultural Día de la Mujer Latina www.diadelamujerlatina.org Día de la Mujer Latina was founded by a Latina breast cancer survivor. The mission of Día de la Mujer Latina is to promote health awareness and wellness to the underserved Latino community by providing informational resources that are culturally and ethnically specific. The organization facilitates early detection screening and prevention care interventions. Resource Checklist ADDRESS: 14 Sunnyvale Lane Manvel, TX 77578 CONTACT INFO: Phone: 281-489-1111 E-mail: [email protected] Available in Spanish Information about screening tests Healthy lifestyle tips Information about preventive medicines Information about depression Additional resources Intercultural Cancer Council www.iccnetwork.org The Intercultural Cancer Council (ICC) promotes policies, programs, partnerships, and research to eliminate the unequal burden of cancer among racial and ethnic minorities, and medically underserved populations in the United States and its associated territories. Resource Checklist ADDRESS: 1 Baylor Plaza MS 620 Houston, TX 77030 CONTACT INFO: Phone: 713-798-4614 E-mail: [email protected] 18 Categorized cancer fact sheets Additional resources and support groups Regional groups Public conferences www.nueva-vida.org Nueva Vida provides a continuous flow of culturally appropriate services to support Latina women diagnosed with cancer in the metropolitan areas of Washington, DC, Baltimore, and Richmond. The organization’s mission is to inform, support, and educate Latinas whose lives have been affected by cancer, including breast cancer. Nueva Vida advocates for access to high-quality medical services for timely detection, diagnosis, and treatment of cancer. CONTACT INFO: Phone: 1-866-986-8432 202-223-9100 E-mail: [email protected] cultural Nueva Vida Resource Checklist Available in Spanish Bilingual support groups Newsletters Video gallery Additional resources Individual counseling Sharsheret www.sharsheret.org Sharsheret nationally supports young Jewish women and their families as they face breast cancer. The organization’s mission is to offer a community of support to women of all Jewish backgrounds diagnosed with breast cancer or at increased genetic risk by fostering culturally relevant individualized connections with networks of peers, health professionals, and related resources. ADDRESS: 1086 Teaneck Road Suite 3A Teaneck, NJ 07666 CONTACT INFO: Phone: 1-866-474-2774 201-833-2341 E-mail: [email protected] Resource Checklist Advanced/metastatic breast cancer information Brochures and booklets Information for caregivers Information for health care professionals Ask a question feature Jewish support program locator Clinical trials information Newsletters Blog 19 cultural Sisters Network Inc www.sistersnetworkinc.org Sisters Network Inc is a national African American breast cancer survivorship organization. The organization is committed to increasing local and national attention to the devastating impact that breast cancer has on the African American community. Resource Checklist ADDRESS: 2922 Rosedale Street Houston, TX 77004 CONTACT INFO: Phone: 1-866-781-1808 713-781-0255 E-mail: [email protected] Online community Financial assistance Additional resources Breast cancer facts Questions for your physician Support groups Young Japanese Breast Cancer Network Bcnetwork.org CONTACT INFO: E-mail: [email protected] The mission of Young Japanese Breast Cancer Network (BCNetwork) is to provide cutting edge treatment information to newly diagnosed Japanese women with breast cancer and to raise awareness among young Japanese women on the importance of early detection. The network understands that a woman diagnosed with breast cancer must face several challenges. Additionally, the network understands that Japanese women living in the United States face language challenges, differences in the healthcare system, and fertility issues after cancer treatments. The goal of BCNetwork is to respond to the medical and social needs of Japanese breast cancer patients. Resource Checklist Articles Symposiums Community seminars Support group meetings Hotline E-newsletters 20 www.cancer.org/Cancer/BreastCancer/ index?ssSourceSiteId=null The American Cancer Society (ACS) is a nationwide, communitybased voluntary health organization dedicated to eliminating cancer as a major health problem. The society’s international mission concentrates on capacity building in developing cancer societies and on collaboration with other cancer-related organizations throughout the world in carrying out shared strategic directions. ADDRESS: 250 Williams Street NW Atlanta, GA 30303 CONTACT INFO: Phone: 1-800-227-2345 E-mail: Through website GENERAL cancer support American Cancer Society Resource Checklist Clinical trials information Coping tips Caregiver information Circle of sharing community Disease-specific information Stories of hope Recent news Available in multiple languages CancerCare www.cancercare.org/diagnosis/breast_cancer CancerCare provides free professional support services to anyone affected by cancer, including patients, caregivers, children, loved ones, and the bereaved. The organization helps more than 100,000 people annually face the crisis of cancer, and the website has become a leading online resource for cancer information, with more than 1 million unique visitors last year. ADDRESS: 275 Seventh Avenue 22nd Floor New York, NY 10001 CONTACT INFO: Phone: 212‑712‑8400 1-800‑813‑4673 E-mail: [email protected] Resource Checklist Advanced/metastatic breast cancer information Free counseling Financial assistance Free community programs Patient stories Podcasts Free publications Connect Education Workshops Available in Spanish 21 GENERAL cancer support Cancer.Net American Society of Clinical Oncology www.cancer.net/cancer-types/breast-cancer Cancer.net is the American Society of Clinical Oncology’s (ASCO’s) patient information website. The website was founded on the belief that well-informed patients are their own best advocates and are invaluable partners for physicians. Cancer.net provides patients and families with timely, comprehensive information to help make informed healthcare decisions. ADDRESS: American Society of Clinical Oncology Attn: Communications and Patient Information Department 2318 Mill Road Suite 800 Alexandria, VA 22314 CONTACT INFO: Phone: 1-888-651-3038 571-483-1780 E-mail: [email protected] Resource Checklist Extensive breast cancer information Information on advanced cancer care planning Publications Tips for coping Patient stories Find an oncologist resource Available in Spanish Cancer and Careers www.cancerandcareers.org Cancer and Careers is a program of the CEW Foundation, the charitable arm of Cosmetic Executive Women, Inc. To help eliminate fear and uncertainty, Cancer and Careers is dedicated to empowering and educating people with cancer to thrive in their workplace by providing expert advice, interactive tools, and educational events. The Cancer and Careers website informs more than 180,000 visitors per year. ADDRESS: Cosmetic Executive Women 286 Madison Avenue 19th Floor New York, NY 10017 CONTACT INFO: Phone: 212-685-5955 E-mail: [email protected] 22 Resource Checklist Questions for your physician Legal and financial information Suggestions for coping Job searching information Ask a career coach blog Patient diaries Information for coworkers Information for health care professionals Available in Spanish www.cancersupportcommunity.org/MainMenu/ About-Cancer/Types-of-Cancer/Breast-Cancer ADDRESS: 1050 17th Street, NW Suite 500 Washington, DC 20036 CONTACT INFO: Phone: 1-888-793-9355 E-mail: [email protected] The Cancer Support Community (CSC) is one of the largest providers of cancer support worldwide, encompassing 56 affiliates as well as more than 100 satellite offices worldwide. CSC is the largest nonprofit employer of psychosocial oncology mental health professionals in the United States. The organization offers services and education that put patients at the center of their care so that no one has to face cancer alone. CSC strives to answer the social and emotional needs of those affected by cancer, and ensures that all affected by breast cancer are empowered by knowledge, strengthened by action, and sustained by their community. GENERAL cancer support Cancer Support Community Resource Checklist Advanced/metastatic breast cancer information Order or download free resources Extensive breast cancer information Create your own website feature Online support Internet radio show Information for family and friends Open to Options treatment counseling CopingUniversity.com www.copinguniversity.com CopingUniversity.com is a service of The Patient/Partner Project. Founded by a cancer caregiver, David Balch, CopingUniversity.com offers stress-reducing tips and inspirational audio and video programs for patients, loved ones, and caregivers. The website is specific to coping strategies, rather than information about cancer. Resource Checklist ADDRESS: PO Box 824 Twin Peaks, CA 92391 CONTACT INFO: Phone: 1-866-725-7877 E-mail: Through website Free e-mail mini-course Patient/partner online progress reports Recorded programs Downloadable handouts Free monthly newsletter 23 GENERAL cancer support National Cancer Institute www.cancer.gov/cancertopics/types/breast The US National Cancer Institute’s website provides accurate, up-to-date information about many types of cancer, information about clinical trials, resources for people dealing with cancer, and information for researchers and health professionals. Resource Checklist ADDRESS: 6116 Executive Boulevard Suite 300 Bethesda, MD 20892 CONTACT INFO: Phone: 1-800-422-6237 Advanced/metastatic breast cancer information Live online chat Toll-free hotline Extensive disease information Clinical trials information Drug dictionary Available in Spanish National Coalition for Cancer Survivorship www.canceradvocacy.org ADDRESS: 1010 Wayne Avenue Suite 770 Silver Spring, MD 20910 CONTACT INFO: Phone: 301-650-9127 E-mail: [email protected] 24 The National Coalition for Cancer Survivorship (NCCS) represents the millions of Americans who live with, through, and beyond cancer. Understanding that cancer survivors and their caregivers face many challenges, the NCCS advocates for changes in how the nation researches, regulates, finances, and delivers quality cancer care; convenes with other cancer organizations to address nationwide public policy issues affecting cancer survivors; and empowers cancer survivors through NCCS publications and programs that provide tools for self-advocacy. Resource Checklist Cancer survival toolbox Survivor stories Financial information Tips for coping Information for health care professionals Telephone workshops Publications News www.patientadvocate.org/resources.php?p=823 Patient Advocate Foundation (PAF) offers assistance to patients who receive a diagnosis of a life-threatening or debilitating disease. PAF case managers assist patients with issues specific to insurance, an employer, or a creditor regarding insurance, job retention, and debt crisis matters. Resource Checklist CONTACT INFO: Phone: 1-800-532-5274 E-mail: [email protected] Downloadable publications Resource directories Clinical trials information Information for uninsured patients Co-pay assistance Webinars Online assistance Toll-free helpline Available in Spanish CaringBridge www.caringbridge.org CaringBridge is a nonprofit organization offering free personalized patient websites to those diagnosed with or recovering from cancer, a significant accident or injury, or another serious illness. CaringBridge focuses on ensuring that families receive the love and compassion they need during a significant health challenge by reaching out to more families. ADDRESS: 1715 Yankee Doodle Road Suite 301 Eagan, MN 55121 CONTACT INFO: Phone: 651-789-2300 651-452-7940 E-mail: Through website Resource Checklist Social media/Web support ADDRESS: 421 Butler Farm Road Hampton, VA 23666 GENERAL cancer support Patient Advocate Foundation Create your own website feature SupportPlanner calendar Amplifier Hub for volunteers Available in Spanish 25 Social media/Web support The Inspire Advanced Breast Cancer Support Community www.inspire.com/groups/advanced-breast-cancer Inspire was created with the belief that patient contributions to medical progress have been historically underappreciated and that progress in medical research will result from involving patients as well as fully valuing their contributions. This privately held company partners with breast cancer organizations to provide online patient communities in a safe, privacy-protected environment. ADDRESS: 66 Witherspoon Street Suite 402 Princeton, NJ 08540 CONTACT INFO: Phone: 1-800-945-0381 E-mail: [email protected] Resource Checklist Advanced/metastatic breast cancer information Create your own website feature Start an Inspire partner organization feature MyLifeLine.org Cancer Foundation www.mylifeline.org Proudly supporting more than 74,000 people, MyLifeLine.org encourages cancer patients and caregivers to create free, customized websites. Each personalized page helps build an online support community of family and friends to foster connection, inspiration, and healing. ADDRESS: 55 Madison Street Suite 750 Denver, CO 80206 CONTACT INFO: Phone: 720-883-8715 E-mail: [email protected] 26 Resource Checklist Breast cancer resource guides Caregiver resources ComfortCare Marketplace for side effects Create your own website feature .com This Resource Guide was supported by Novartis Pharmaceuticals Corporation. The information is designed to be a summary of information and not an exhaustive list of available resources. Intellisphere Oncology Specialty Group was responsible for selecting the groups included in this supplement. 11/12 BST-1053809
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