Related Links
This section of the Families USA Web site offers links to a wide range of other organizations and agencies that are concerned with health issues. We are planning to provide links in the categories listed below and to expand the listings. Until then, please click on Research/Advocacy Organizations and Federal Government to see the related links currently available.
Research/Advocacy Organizations
Below are links (in alphabetical order) to web sites that contain valuable information on a variety of health issues. To have your health-related web site considered as an addition to this page, contact the Webmaster via e-mail or via phone at (202) 628-3030.
ACORN (the Association of Community Organizations for Reform Now) campaigns for the rights of lower- and middle- income Americans.
The ADA Technical Assistance Program is a comprehensive resource for information on the Americans with Disabilities Act (ADA) and accessible information technology, including links to local Disability and Business Technical Assistance Centers (DBTACs). These Centers provide information, materials, technical assistance, and training on such topics as building accessible Web pages, making distance learning programs accessible, and ensuring that technology purchases are those that best work with assistive devices used by people with disabilities.
Aging Solutions provides a wealth of information that is designed to make it easier for family caregivers to find reliable information quickly and avoid overlooking things that are important in the care of their loved one. The Web site includes advice, a variety of articles, symptoms of major conditions, comprehensive checklists, a glossary of terms, and links to key resources.
Alliance for Health Reform is a non-partisan, nonprofit organization that provides information on health reform in a number of formats to journalists, elected officials and their staffs, and other shapers of public opinion. Under Resources, the site provides health policy links for numerous groups and agencies, including business and employer groups, consumer groups, health professional groups, labor unions, and think tanks and foundations. In the Newsroom section, advocates can find experts in various specialties and their contact information.
The American Pain Foundation is a nonprofit information resource and patient advocacy organization serving people with pain. The foundation's mission is to improve the quality of life of people with pain by providing practical information for patients, raising public awareness and understanding of pain, and advocating against barriers to effective treatment.
The American Society on Aging represents professionals in the field of aging concerned with the physical, emotional, social, economic, and spiritual aspects of aging. It includes researchers, practitioners, educators, business people, and policymakers. The society offers educational programming, training resources, and publications, and it includes eight constituent groups.
Asian & Pacific Islander American Health Forum is a national advocacy organization dedicated to promoting policy, program, and research efforts for the improvement of health status of all Asian American and Pacific Islander communities.
The Association of Maternal and Child Health Programs' (AMCHP) mission is to provide leadership to assure the health and well being of all women of reproductive age, children, and youth, including those with special health care needs and their families.
The Association of State and Territorial Health Officials (ASTHO) is a nonprofit association that represents the public health agencies of each of the U.S. states and territories. The association is engaged in a wide range of legislative, scientific, educational, and programmatic issues and activities on behalf of public health.
At Health, Inc. provides mental health information, resources, a directory of licensed mental health professionals, and continuing education information. At Health also publishes a weekly online newsletter to help practitioners and consumers find current, high-quality mental health information on the Internet.
BenefitsCheckUp, a service of the National Council on Aging, is an online resource that identifies federal and state assistance programs for older Americans. To use the confidential service, the user spends a few minutes entering financial information into an online questionnaire. The program then explains what benefit programs he or she might be eligible for and how to apply for them. The program does not require the user to enter his or her name, address, Social Security number, or any other identifying information.
CareScout is a company that helps families make informed eldercare decisions. It connects consumers to eldercare information, ratings, comparative data, and products, including quality of care information on nursing homes, assisted living facilities, and home health agencies nationwide. CareScout has also developed the CareScout Network, which enables private pay individuals to receive discounts on the cost of care.
Caring Connections is a national nonprofit organization dedicated to improving end-of-life care. It operates a national crisis and information hotline dealing with end-of-life issues. Its Web site provides state-specific living wills, advance directives, and medical powers of attorney.
The Center on Budget and Policy Priorities works on fiscal policy issues and issues affecting low- and moderate-income families and individuals. The Center specializes in research and analysis oriented toward policy decisions that legislators face at both federal and state levels. The Center examines data and research findings and produces analyses designed to be accessible to public officials, other nonprofit organizations, and the media.
The Commonwealth Fund is a national foundation that performs independent research and publishes papers and reports on health and social policy issues. The site provides information on the following health policy topics: health insurance and the uninsured, Medicare, Medicaid and other state programs, health care quality improvement, minority health, long-term care, child and adolescent health, managed care, and women's and men's health.
Community Catalyst is a national, nonprofit health care advocacy organization dedicated to strengthening the voice of the health care consumer and building stronger state and regional networks to bring about health policy and system change. The organization works with state, local, and grassroots consumer groups in over 30 states to expand health care access, improve health care quality, and preserve health care resources. Community Catalyst also provides a range of capacity-building services to consumer health advocacy organizations, including policy analysis, legal expertise, community organizing, organizational development, and media outreach.
Community Voices - Health Care for the Underserved.
The Consortium for Citizens with Disabilities is a coalition of approximately 100 national disability organizations that advocates on behalf of people of all ages with physical and mental disabilities and their families.
Consumers' CHECKBOOK, a nonprofit research organization, publishes three guides designed to help patients make informed health care choices. "The Consumers' Guide to Top Doctors" lists 15,000 top-rated physicians nationwide practicing in 30 different specialty fields. "The Consumers' Guide to Hospitals" evaluates more than 4,500 hospitals across the U.S. "The Consumers' Guide to Health Plans" rates all major health insurance plans and offers in-depth advice on how to choose a plan based on quality and cost and how to get the best possible care from a plan.
Consumer's Union is the nonprofit publisher of Consumer Reports magazine. The Health Care section of the site provides informative and educational materials developed by Consumers Union's advocacy offices on health care affordability, managed care, and health care reform issues.
The Council for Disability Rights is an advocacy group dedicated to advancing the rights and enhancing the lives of people with disabilities.
Cover the Uninsured Week provides useful information for those working to reduce the ranks of the uninsured. The site includes a storybank of individuals who have suffered because they lack insurance, a databank of charts on insurance trends, a feature that tracks legislation designed to increase access to health coverage, selected resources for those seeking health coverage, and a glossary of terms.
The Cross Cultural Health Care Program offers publications and videos on health issues of concern to ethnic minority communities.
Demos: A Network for Ideas and Action was founded in 1999 as a national research and advocacy organization to help create a new long-term vision for American society. The organization works creatively and collaboratively to bring new ideas on critical issues into the public arena and build networks for action. It focuses on two of the nation's most urgent current challenges: strengthening our democracy and sharing economic opportunity more broadly.
The Duke University Health Policy Cyberexchange is a comprehensive gateway to health policy resources on the Internet with links both to organizations and to health policy issues.
The Economic Success Clearinghours connects to resources about effective policies, programs, and financing strategies that help low-income and working poor families, including welfare reform.
The Elizabeth M. Boggs Center on Developmental Disabilities is part of a national network of University Centers for Excellence in Developmental Disabilities Education, Research, and Service. An integral component of the University of Medicine and Dentistry of New Jersey-Robert Wood Johnson Medical School Department of Pediatrics, the Boggs Center promotes a community-based, capacity-building approach to the delivery of health care and community supports for people with developmental disabilities.
The Employee Benefit Research Institute (EBRI) is a nonprofit, nonpartisan research organization that examines employee benefit trends and economic security. Their programs include policy forums, round tables, briefings, testimony, interviews, and speeches. Major studies cover Social Security reform, individual investment efducation and results, health insurance coverage, and pension design and investment trends. Major surveys include the annual Retirement Confidence Survey and the Health Confidence Survey.
The Express Lane Eligibility Web Site is designed to provide advocates, community leaders, and policymakers with the tools they need to provide health insurance to more than 4 million uninsured children enrolled in such public programs as Food Stamps and School Lunch. The site aims to increase children's health coverage by connecting Medicaid and SCHIP with other public programs, such as WIC and Food Stamps. This Web resource provides a central clearinghouse for information on Express Lane Eligibility strategies, including research, resources, and real-world examples to help communities and states undertake Express Lane Eligibility.
Family Caregiver Alliance (FCA) is a support organization for caregivers of adults with Alzheimer's disease, stroke, traumatic brain injury, Parkinson's disease, ALS, and related brain disorders. FCA was the first community-based, nonprofit organization in the country to address the needs of families and friends providing long-term care by developing services, advocating for public and private support, conducting research, and educating the public.
The Food Research and Action Center (FRAC) is a national organization working to improve public policies to eradicate hunger in the United States. FRAC is a nonprofit, nonpartisan research and public policy center that serves as the hub of an anti-hunger network of thousands of individuals and agencies across the country. FRAC works at the national, state, and local levels to form a comprehensive strategy for reducing hunger in this country, including: acting as a watchdog, providing program support, serving as a clearinghouse for national and local organizations, and conducting public information campaigns.
FORCE: Facing Our Risk of Cancer Empowered is a nonprofit organization for women who are at high risk of getting breast or ovarian cancer due to family history and genetic status, and for members of families in which a BRCA mutation may be present. The organization's Web site provides an extensive resource guide, links to numerous Web sites, a message board, and a regular schedule of online chats.
The Future of Children is a journal that focuses on a variety of topics related to children's well-being, with special emphasis on providing objective analysis and evaluation, translating existing knowledge into effective programs and policies, and promoting constructive institutional change. The Web site for the journal contains back issues, features that enable visitors to get more out of the journal, and a free email newsletter.
Health Hippo is a collection of policy and regulatory materials related to health care.
The Health Privacy Project is dedicated to raising public awareness of the importance of ensuring health privacy in order to improve health care access and quality, both on an individual and a community level. The Project is a part of the Institute for Health Care Research and Policy at the Georgetown University Medical Center.
healthinsuranceinfo.net, a project of Georgetown University's Institute for Health Care Research and Policy, provides online consumer guides for each state and the District of Columbia summarizing laws that protect people when they are trying to get and keep health insurance. These guides include lists of relevant state agencies and glossaries of commonly used terms. The site also offers an online newsletter that contains stories from health care consumers that provide perspective on how private coverage works for people in various circumstances.
The Hospice Patients Alliance (HPA) is a nonprofit private charitable organization serving the general public. The Web site provides information on hospice management, protecting patient rights, standards of care, and consumer advocacy.
The Institute for Health Freedom is a nonpartisan, nonprofit research center. Through its research, publications, and public policy debates, the Institute provides a forum for exchanging ideas about health freedom. The Institute works with scholars and policy experts in the areas of economics, health care, law, philosophy, and the sciences to foster public debate.
iSafetyNet.US is a comprehensive directory of Web links and online services for all sectors of the public and private health and human services field, a Web site dedicated to cataloging America's online social safety net. The site supplies links to other Web sites that provide consumer information on a wide variety of topics, including benefit eligibility screening, cancer prevention, caregiving, health care privacy, the Medicare prescription drug law, prescription drug assistance programs, and traveling with disabilities.
The Joint Commission on Accreditation of Healthcare Organizations (JCAHO) provides information about quality of care issues. The site allows consumers to check the performance of local health care facilities, including hospitals, surgery centers, and nursing homes. It also provides a place for consumers to report complaints about the quality of care provided at such facilities. In addition, the site provides tips consumers should know to prevent "wrong site" surgery, a list of five steps to obtaining safe health care, and guides that help consumers ask the right questions before selecting a health care setting.
The Kaiser Commission on Medicaid and the Uninsured was established by the Kaiser Family Foundation to improve access to care for low-income Americans.
The Kaiser Family Foundation Web site is a health care policy clearinghouse on a myriad of topics, including health insurance costs, HIV/AIDS, Medicaid and SCHIP (the State Children's Health Insurance Program), Medicare, minority health, prescription drugs, state health policy, the uninsured, and women's health policy. In addition, the site provides an extensive public opinion tracking service. It is also the parent site of kaisernetwork.org and State Health Facts Online.
kaisernetwork.org is a free online service from the Kaiser Family Foundation that brings key health policy information to policymakers, journalists and the health care community. The Kaiser Health Information Network includes three daily online reports on health policy, HIV/AIDS, and reproductive health, in addition to Kaiser First Edition, a first look at the morning papers with a round up of health policy headlines from across the country. HealthCast also provides regular "webcasting" video and audio coverage of important health events in Washington, DC and across the country, including congressional hearings, meetings, and press conferences.
Last Acts is a national coalition of organizations working to improve care near the end of life. Consumers can use their Web site to identify coalition partners in their state and learn how to become partners in the Last Acts Campaign. The site also has articles, brochures, a book shop, and helpful links.
The Legal Action Center is a law and policy organization that fights discrimination against people with histories of addiction, AIDS, and criminal records and advocates for sound public policies in these areas.
Mathematica Policy Research, Inc. engages in policy research and analysis. It was founded in 1968 to conduct the first major social policy research experiment in the United States. Since then, Mathematica has conducted important evaluations of policies and programs in health care, welfare, education, nutrition, employment, and early childhood development.
The Medicare Rights Center (MRC) is a not-for-profit organization dedicated to ensuring that older adults and people with disabilities with Medicare get good, affordable health care. The Medicare Rights Center Web site offers helpful and reliable Medicare information for consumers and professionals and Medicare counseling by e-mail.
MEDLINEplus® is a consumer health Web site developed by The National Library of Medicine® (NLM®) at the National Institutes of Health. Along with comprehensive coverage of over 600 health topics, MEDLINEplus also contains nightly newswire updates, interactive tutorials with sound and pictures, a medical encyclopedia, drug information, directories of health facilities and professionals, and more. It's free, commercial-free, and completely private.
Moving Ideas is a network of organizations that provides timely information and leading ideas about national policy and politics.
Myziva is a free site for potential nursing home residents and their loved ones to find, compare, and evaluate nursing homes in their community. The site also provides information on what to look for when visiting a nursing home, how to pay for care at such a home, how to get admitted, and how to prepare for admission, as well as a helpful glossary of terms.
National Alliance for the Mentally Ill (NAMI) members are committed to increasing access to community-based services, including housing and rehabilitation, people with mental illness. Most NAMI members have used up their private funds and insurance and must rely on the public mental health system.
The National Alliance for Hispanic Health, the National Coalition of Hispanic Health and Human Service Organizations, is an organization that focuses on the health and human service needs of the Hispanic community.
The National Citizens' Coalition for Nursing Home Reform, was formed because of public concern about substandard care in nursing homes. NCCNHR provides information and leadership on federal and state regulatory and legislative policy development and models and strategies to improve care and life for residents of nursing homes and other long term care facilities.
The National Coalition of Mental Health Professionals and Consumers has members representing all disciplines of mental health care, as well as attorneys, clergy, consumers, and consumer advocates. The coalition has three goals: to promote mental health care that is pro-patient and that preserves a patient's right to choice, personal privacy, and control over mental health treatment; to expose the problems and abuses of managed care; and to bring about needed regulation of the managed care industry. Their Web site includes a list of links to other organizations, excerpts from their Consumer Protection Manual, and a list of relevant articles and presentations.
The National Coalition on Health Care is a national, nonpartisan coalition working to improve America's health care. The Coalition is comprised of businesses, labor unions, religious groups, primary care providers, and educators.
The National Conference of State Legislatures provides links to all state legislature Web sites.
The National Council of Churches is an ecumenical organization comprised of 36 Protestant and Orthodox denominations and their 140,000 local congregations from coast to coast. These congregations work together in Bible translation, Christian education, interfaith relationships, environmental and economic justice, and a 10-year mobilization to address the issue of poverty in America.
National Council of La Raza (NCLR) is a private, nonprofit, nonpartisan, organization established in 1968 to reduce poverty and discrimination and improve life opportunities for Hispanic Americans.
National Health Law Program (NHeLP) is a national public interest law firm that seeks to improve health care for America's working and unemployed poor, people of color, the elderly, and people with disabilities. NHeLP serves legal services programs, community-based organizations, the private bar, providers, and individuals who work to preserve a health care safety net for the millions of uninsured or underinsured low-income people.
The National Immigration Law Center (NILC) is a national support center whose mission is to protect and promote the rights of low-income immigrants and their family members. The Center conducts policy analysis and impact litigation and provides publications, technical advice, and trainings to a broad constituency of legal aid agencies, community groups, and pro bono attorneys.
The National Partnership for Women & Families is a nonprofit, nonpartisan organization that uses public education and advocacy to promote fairness in the workplace, quality health care, and policies that help women and men meet the dual demands of work and family.
Needymeds.com is a Web site that provides complete and accurate information on the patient assistance programs that are established by prescription drug manufacturers. These programs are designed to help those who can't afford their medicines obtain them at no cost or low cost. Unfortunately, many people, including doctors, nurses, social workers, and patients, don't know that these programs exist. The information on the Web site is obtained only through regularly contacting every drug company directly.
The Ohio Family Support Collaborative (FSC) is a grassroots advocacy group consisting of Ohio families who have children with disabilities. Its Web site provides families with comprehensive information on finding (and applying for) supports and services, and it also provides updates on disability issues and legislation.
The Parkinson's Action Network (PAN) is the unified advocacy voice of the Parkinson's Disease community. Through education and interaction with its grassroots network, the Parkinson's community, scientists, policy and opinion leaders, and the public at large, PAN advocates for increased and accelerated investment of federal funding to ease the burden and bring a cure to the 1 million Americans who suffer from Parkinson's. PAN also seeks to increase public awareness of Parkinson's Disease and its impact, increase the involvement and influence of those living with Parkinson's Disease in federal and state legislation, ensure Medicare and private compensation for experimental therapies, and prevent employment discrimination against Parkinson's-affected workers.
Patients not Patents Patents on drugs, biologics, and medical devices increase health care costs, putting them out of reach for many individuals and leaving patients without adequate treatment. Patients not Patents challenges the validity of medical patents before the United States Patent and Trademark Office and educates the public about how patents affect health care availability. The Patients not Patents Web site tracks the progress of patent requests, offers updates on the industry, and outlines the organization's efforts to reduce barriers to affordable health care.
Project Vote Smart (PVS) aims to provide unbiased and accurate information in a user-friendly format accessible online and by a toll-free hotline (1-888-VOTE-SMART). PVS provides a comprehensive database about thousands of candidates and elected officials, including President, members of Congress, governors, and state legislators. Less detailed information is available at the county and local level for each state. The PVS Web site also includes politicians' public statements, voter registration forms for each state, contact information for state and local election offices, polling place and absentee ballot information, and ballot measure descriptions for each state (where applicable).
PubMed provides access, free of charge, to MEDLINE. The site includes state-of-the-art retrieval features such as "related articles," links to related databases, and links to publishers' full-text articles.
RealBenefits, developed by Community Catalyst, is a Web-based eligibility screening tool that enables community service agencies and advocacy groups to analyze clients' and other community residents' eligibility for public benefits, including income, food, and health programs. It enables users to quickly and accurately apply the regulations of myriad public programs to individual household circumstances in order to assist people in overcoming information and application barriers.
The Research Forum on Children, Families and the New Federalism facilitates the development of rigorous, policy relevant research about the effects of the new federalism on poor and vulnerable populations. The Forum is sponsored by the National Center for Children in Poverty (NCCP) at the Columbia School of Public Health. The Web site offers an online database with summaries of large and small-scale welfare research projects.
Service Employees International Union is a union of 1.3 million members united to improving the lives of working people and their families and leading the way to a more just and humane society.
Speakout.com is a Web-based public policy resource and community. The site showcases leading research, opinions, and events that shape public policy issues, including education, technology, and health care.
The State Coverage Initiatives (SCI) program is a national initiative that works with states to plan, execute, and maintain health insurance expansions, as well as to improve the availability and affordability of health care coverage. SCI works with states to help them expand coverage to working families, build on employer-based health insurance, and foster collaboration among stakeholders. SCI also provides a variety of hands-on support services that are confidential, nonpartisan, and free of charge.
UHCAN!, The Universal Health Care Action Network, is a group of individuals and organizations committed to achieving health coverage for all Americans. Their Web site provides resources and shares information regarding the development of strategies for health care justice from the consumer's point of view.
The World Association of Physically Disabled is a nonprofit organization that addresses the needs, concerns, and issues of the "World's Largest Minority," the disabled.
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Federal Government
ClinicalTrials.gov provides patients, family members, and health care professionals with easy access to information on clinical research studies for a wide range of diseases and conditions. Information on the site includes a summary of the purpose of the study, recruiting status, criteria for patient participation, the location of the trial, and specific contact information.
The Department of Health and Human Services (HHS) is the parent agency of many federal health care agencies (such as the CDC, CMS, and NIH). This site provides information on diseases and conditions, safety and wellness, drug and food safety, disasters and emergencies, families and children (including Medicaid and SCHIP), aging, and federal policies and regulations. This site also has a reference collection of dictionaries and glossaries on a wide variety of health care and health policy terms.
Department of Labor: The Health Benefits Advisor is designed to help workers and their families better understand group health benefits provided by employers and by employee organizations (such as unions) and the laws that govern them, especially when they experience changes in their life and work situations. The Advisor may also assist employers in understanding their responsibilities under the applicable laws. The site provides guidance that is general in nature and does not address health benefits offered through federal, state, or local government plans or church plans.
The Federal Citizen Information Center (FCIC) is a small government agency that helps other federal agencies develop, promote, and distribute consumer information to the public. It puts out a quarterly Consumer Information Catalog that lists more than 200 free or low-cost booklets on such topics as health, federal benefits, child care, consumer protection, and more. These publications are also posted on the agency's Web site, where they can be viewed or downloaded for free. The site also features consumer news, tips, and updates from various federal agencies.
GovBenefits is a free, online screening tool that informs consumers about whether they may qualify for some federal programs, including health insurance programs such as SCHIP (the State Children's Health Insurance Program), Medicaid, and Medicare. This service is confidential - users are not required to enter names, phone numbers, Social Security numbers, or any other identifying information. A user simply answers questions about herself, and GovBenefits returns a list of government benefits she might be able to receive, along with information on how to apply.
Home Health Compare provides detailed information about Medicare-certified home health agencies and allows users to compare the quality of such agencies from state to state. This information includes home health agency characteristics, such as the Medicare covered services offered by the agency, and home health quality measures. Information from Home Health Compare should be used with the other information gathered about home health agencies from your doctor, state survey agency, or state quality improvement organization. Note: New home health agencies may not appear for several months after being approved by Medicare.
Medicare.gov is the official government Web site for Medicare beneficiaries. The site provides information on Medicare billing, enrollment, and plan choices, the new Medicare drug discount cards, long-term care, a section devoted to frequently asked questions, and a glossary of terms. The site also includes a variety of search tools designed to help enrollees compare health plan options, determine their eligibility and enrollment status, locate participating physicians, and compare nursing homes.
Consumer Information
The National Directory of Family and Marriage Counseling is a national directory of marriage counselors and family counselors that offers comprehensive profiles of the listed therapists to aide you in choosing a therapist that is right for you and your family. In addition to our free, searchable directory, we have also compiled a research and resource center. We encourage you to visit our Family & Marriage Counseling Articles page which contains articles and abstracts on such topics as how to determine if family and marriage counseling is right for you, how to find a good family and marriage counselor, and what to expect in your marriage counseling session. Our Resources section offers a compendium of global and community-specific links to help you make an informed decision when evaluating a marriage and family counselor.
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