Government Resources and National Organizations
Voices of a Broken System
Voices of a Broken System is based on the testimony received from June 2000 through May 2001 by The President's Cancer Panel. The panel was charged under the National Cancer Act of 1971 to monitor the development and implementation of the National Cancer Program and to report promptly to the President on barriers to the Program's effective implementation.
The Panel recognized that invited testimony did not carry the weight of empirical study. However, the Panel believes there is a point at which anecdotes become a body of qualitative evidence, and the importance of the issues echoed repeatedly and consistently throughout every part of the country cannot, and must not, be dismissed. These voices of a broken health care system must be heard.
To obtain free copies of the book or video of Voices of a Broken System, contact:
The President's Cancer Panel
31 Center Drive Building
31 Room 3A18
Bethesda, MD 20892
Telephone: (301) 496-1148
e-mail address: pcp-r@mail.nih.gov
There is no cost for this book
Federal
- Center for Disease Control's Order Center for Breast Cancer Publications
This site is the Center for Disease Control's Internet order form for breast cancer publications regarding strategies, guidelines, and more. - The Long Island Breast Cancer Study Project
The LIBCSP is a multi-study effort to investigate whether environmental factors are responsible for breast cancer. The investigation began in 1993 and is funded and coordinated by the National Cancer Institute, in collaboration with the National Institute of Environmental Health Sciences. The LIBCSP is part of an overall research approach to investigate the causes of breast cancer and find ways to prevent the disease. - Medicare Offical Government Site
Sponsored by the Centers for Medicare and Medicaid Services (CMS), this Web site provides updates and information to Medicare beneficiaries about their coverage. The Wellness link on this site provides information about services, a calendar of events, and specific information about mammography. As CMS expands its preventative care, this site may be a useful resource for patients to learn about their Medicare benefits. This site is available in English, Spanish, and Chinese. - National Cancer Institute's CancerNet
CancerNet contains a range of cancer information including summaries on cancer treatment, screening, prevention, and supportive care. Information on ongoing clinical trials, a bibliographic database, fact sheets, news, and other resources are also provided. - Office of Minority Health Resource Center
Minority information on breast cancer including fact sheets, toll-free phone numbers, breast health resources, and links to other organizations. "A Breast Cancer Resource Guide for Minority Women" can be downloaded at the Publications link. - U.S. Food and Drug Administration (FDA) Mammography Program Web site
FDA site provides detailed information about quality standards required for all facilities performing mammography. The site includes extensive information on MQSA (Mammography Quality Standards Act) and also answers a variety of frequently asked questions about mammography and FDA certified mammography locations. Includes the Mammography Site Database search engine. Women may search for a nearby FDA certified mammography facility by entering their state and zip code.
New York State
- Breast Cancer and Environmental Risk Factors in New York State
This Cornell University resource contains maps of breast cancer incidence and mortality by county in New York State. It also provides information on the relationships between breast cancer and environmental risk factors, including pesticides and dietary factors. - Cancer Registry - New York State
The New York State Cancer Registry site contains state cancer statistics in downloadable files. Volume One, 1992 -1996, includes county level data by gender. Volume Two, 1980-1996, includes data by gender, year, stage at diagnosis, race, ethnicity, and age for New York State, New York City, and New York State excluding New York City. - New York State Office for the Aging Facts About Breast Cancer Page
This New York State Office for the Aging site provides information on a woman's risk for breast cancer, the National Cancer Institute's recommendations about mammograms and the benefits and limitations of the procedure. - Patients' Breast and Cervical Cancer Services - NYS Department of Health
The New York State Department of Health site presents a teaching tool for understanding Breast Cancer in New York State. The state standards for mammography facilities and a list of facilities by service area are also included, as well as information about breast cancer studies and instructions for breast self-exam.
National Organizations
- American Cancer Society
This site is the American Cancer Society's online resource for breast cancer information and programs including research, survivorship, and advocacy. Breast Cancer Treatment Guidelines for Patients, produced collaboratively by the Society and the National Comprehensive Cancer Network is available here. - American College of Obstetricians and Gynecologists (ACOG)
The national web site of ACOG, the national medical organization of physicians who provide health care for women, and who are the primary referral source for mammograms. - The Asian American Network for Cancer Awareness, Research, and Training (AANCART)
AANCART, a cooperative agreement between the National Cancer Institute and The Ohio State University, is the first-ever national cancer awareness, research, and training infrastructure intended to address Asian American concerns. AANCART seeks to build partnerships to increase cancer awareness, promote greater participation of Asian Americans in clinical studies, increase training opportunities for Asian Americans, and to develop pilot programs in four targeted regions: Los Angeles, New York, San Francisco, and Seattle. AANCART is based in Columbus, Ohio, at The Ohio State University. The Web site provides education and information on studies, publications, and events related to Asian Americans' cancer concerns. - American Psychosocial Oncology Society (APOS)
The American Psychosocial Oncology Society's mission is to promote the psychological, social, and physical well being of patients with cancer and their families at all stages of disease and survivorship through clinical care, education, research, and advocacy. The APOS site includes information on their toll-free hotline referral program, established to assist cancer patients and advocacy organizationsto obtain local referrals for counseling and support services. - National Alliance of Breast Cancer Organizations (NABCO)
NABCO's site provides information on breast cancer resources, support groups, clinical trials, advocacy and more. NABCO publications, including a Fact Sheet series on Breast Cancer and the 2003/2004 NABCO Breast Cancer Resource List are available online or by calling (888)806-2226. - National Asian Women's Health Organization (NAWHO)
NAWHO's National Plan of Action on Asian American Women and Breast Cancer provides critical recommendations for increasing the participation of Asian American women in breast cancer research, outreach and education programs, and advocacy efforts. Site provides information on NAWHO initiatives, advocacy, publications, and more. - The National Breast Cancer Coalition (NBCC)
NBCC is a grassroots advocacy effort in the fight against breast cancer. Its mission is to eradicate breast cancer through action and advocacy. The NBCC web site contains information on legislative activities, education and outreach programs, breast cancer news, and more. - National Consortium of Breast Centers, Inc. (NCBC)
NCBC is a non-profit membership organization of breast health professionals and businesses that provide services for patients dedicated to promoting excellence in breast health care. NCBC focuses on the development and expansion of breast center programs, and disseminating information to professionals regarding breast health care, particularly advances in breast care techniques and patient options. The web site has search directories for breast health facilities around the country, consultants to breast centers, and companies that offer breast health products and equipment to breast centers. Information on NCBC's annual interdisciplinary breast conference is also available on the site. - National Cancer Registrars Association (NCRA)
The NCRA Web site provides information about the association, the registry profession, and articles of interest published by affiliated organizations. It also answers the questions: What is a cancer registry? Why collect information on cancer patients? What is a "cancer registrar"? How are registry data used? How do you become a cancer registrar? - The National Lymphedema Network (NLN)
NLN is a non-profit organization providing education and guidance to lymphedema patients, health care professionals, and the general public by disseminating information on the prevention and management of primary and secondary lymphedema. - Oncology Nursing Society (ONS) - Patient Education
ONS is a national organization of registered nurses and other healthcare professionals dedicated to excellence in patient care, teaching, research, administration and education in the field of oncology. ONS has developed this cancer information service for members, other healthcare providers, people with cancer, and their families and friends. - Sisters Network
The Sisters Network, Inc. is a national African American breast cancer survivors organization with affiliate chapters nationwide. Dedicated to increasing local and national attention to the devastating impact that breast cancer has in the African American community, the Sisters Network offers educational resources and publications designed for African American women, peer networking and support groups. Services also include research, advocacy and community educational outreach projects. - Susan G. Komen Breast Cancer Foundation
This Komen Foundation site has message posting boards and a National Toll-Free Breast Care Helpline in English, Spanish at 800-462-9273. TDD is also available. Grant and funding opportunities are described and downloadable grant applications are available. Breast health and cancer information can be accessed through a direct link to breastcancerinfo.com, an informational service of the Komen Foundation. - Y-Me National Breast Cancer Organization
The Y-ME Web site is designed to be a support and information resource for anyone who has been impacted by breast cancer. The site has information on their 24 hour Hotline, on support services and educational resources, including Y-Me publications and an online multimedia resource library. The Web site is available in English and Spanish.
