Cancer
American Cancer Society (ACS)
The American Cancer Society is a nationwide, community-based voluntary health organization dedicated to helping individuals and their families understand and manage cancer. With more than 3,400 local offices, the services provided to patients, families, and health care providers are far reaching.
www.cancer.org
CancerCare®
CancerCare is the oldest and largest nonprofit agency dedicated to helping people face the many challenges of a cancer diagnosis. CancerCare provides free professional support services, including counseling, education, financial assistance and practical help, to people with cancer, their loved ones, and healthcare professionals across the country.
www.cancercare.org
Cancer Care Connection (CCC)
Cancer Care Connection is a non-profit service organization that helps people make informed decisions through professional coaching and personalized information and resource connections. Cancer Care Connection’s (CCC) mission is to provide individuals and families affected by cancer with personal coaching, Internet navigation assistance, and useful information and resource connections. Call toll-free at 866-266-7008
www.cancercareconnection.org
Cure Search
CureSearch unites the world’s largest childhood cancer research organization, the Children’s Oncology Group, and the National Childhood Cancer Foundation through our shared mission to cure childhood cancer. Research is the key to cure. At more than 200 Children’s Oncology Group member institutions worldwide, CureSearch’s dedicated physicians, nurses and scientists are conducting clinical trials and performing research to identify cancer causes and pioneer treatments and cures. CureSearch NCCF supports this lifesaving research by raising public awareness and funds through awareness, legislative and fundraising programs, which directly contribute to increasing survival rates.
www.CureSearch.org
Facing Forward Series – Life After Cancer Treatment
Life After Cancer Treatment, a publication of National Cancer Institute (NCI), covers post-treatment issues such as follow-up medical care, physical and emotional changes, changes in social relationships and workplace issues.
www.cancer.gov/cancertopics/life-after-treatment
Mylion.org
www.mylion.org is a National Community Service Initiative sponsored by the Corporation for Public Broadcasting based on the documentary film A Lion in the House by Steven Bognar and Julia Reichert. The film followed five young people living with childhood cancer and their families. Mylion.org offers a tool kit with information describing the impact of cancer on families and sibling, how friends can help, and information for doctors and nurses helping children with cancer.
National Cancer Institute
The National Cancer Institute (NCI) is a component of the National Institutes of Health (NIH), one of eight agencies that compose the Public Health Service (PHS) in the Department of Health and Human Services (DHHS). The National Cancer Institute coordinates the National Cancer Program, which conducts and supports research, training, health information dissemination, and other programs with respect to the cause, diagnosis, prevention, and treatment of cancer, rehabilitation from cancer, and the continuing care of cancer patients and the families of cancer patients.
www.cancer.gov
National Coalition for Cancer Survivorship (NCCS)
The National Coalition for Cancer Survivorship was founded in 1986 by and for people with cancer and those who care for them. NCCS is a patient-led organization representing survivors of all types of cancer and their families through information, support, and advocacy. The Cancer Survival Toolbox® (www.cancersurvivaltoolbox.org) is a free audio program designed to help cancer survivors and caregivers develop the practical tools to deal with cancer.
www.canceradvocacy.org
Partnership for Parents
The Partnership for Parents is a Web-based support network for parents of children with serious illnesses. The organization’s Web site is designed to be a haven where parents can feel the solace of kindred spirits while finding the information they need to cope with their situation and navigate their difficult journey.
www.partnershipforparents.org
Death & Dying
Aging With Dignity
Aging with Dignity publishes Five Wishes, an easy-to-use legal document that helps adults of all ages plan for the care they want in case they become seriously ill.
www.agingwithdignity.org
Caring Connections
Caring Connections is a program of the National Hospice and Palliative Care Organization. It is a national consumer engagement to improve care at the end of life, supported by a grant from The Robert Wood Johnson Foundation. Caring Connections provides a variety of free resources on end-of life issues.
www.caringinfo.org.
Hospice Foundation of America
The Hospice Foundation of America exists to help those who cope personally or professionally with terminal illness, death, and the process of grief and bereavement.
ww.hospicefoundation.org
National Hospice and Palliative Care Organization
The National Hospice and Palliative Care Organization (NHPCO) is the largest nonprofit membership organization representing hospice and palliative care programs and professionals in the United States. The organization is committed to improving end of life care and expanding access to hospice care with the goal of profoundly enhancing quality of life for people dying in America and their loved ones.
www.nhpco.org
The Soros Foundation‘s Project on Death in America (PDIA) distributed $45 million in grant awards to organizations and individuals working to improve care for dying patients and their families. The PDIA Web site offers numerous links to this network of resources.
www.soros.org/initiatives/pdia/about
Disabilities
American Association of People with Disabilities
The largest national nonprofit cross-disability member organization in the United States, dedicated to ensuring economic self-sufficiency and political empowerment for the more than 56 million Americans with disabilities. AAPD works in coalition with other disability organizations for the full implementation and enforcement of disability nondiscrimination laws, particularly the Americans with Disabilities Act (ADA) of 1990 and the Rehabilitation Act of 1973.
www.aapd-dc.org
American Foundation for the Blind is a national nonprofit whose mission is to ensure that the ten million Americans who are blind or visually impaired enjoy the same rights and opportunities as other citizens. The American Foundation for the Blind promotes wide-ranging, systemic change by addressing the most critical issues facing the growing blind and visually impaired population—employment, independent living, literacy, and technology.
www.afb.org/Section.asp?SectionID=42
American Speech-Language-Hearing Association (ASHA) is the professional, scientific, and credentialing association for more than 118,000 members and affiliates who are audiologists, speech-language pathologists, and speech, language, and hearing scientists.
www.asha.org
The Arc of the United States works to include all children and adults with cognitive, intellectual, and developmental disabilities in every community.
www.thearc.org
Easter Seals has been helping individuals with disabilities and special needs, and their families, live better lives for more than 80 years. From child development centers to physical rehabilitation and job training for people with disabilities, Easter Seals offers a variety of services to help people with disabilities address life’s challenges and achieve personal goals.
www.easterseals.com/site/PageServer
National Library Service for the Blind and Physically Handicapped (NLS)
Through a national network of cooperating libraries, NLS administers a free library program of braille and audio materials circulated to eligible borrowers in the United States by postage-free mail.
www.local.gov/nls/
United Cerebral Palsy (UCP) is the leading source of information on cerebral palsy and is a pivotal advocate for the rights of persons with any disability. As one of the largest health charities in America, the UCP mission is to advance the independence, productivity and full citizenship of people with disabilities through an affiliate network.
www.ucp.org
Family Genetics
KidsHealth for Parents, Genetic Counseling
KidsHealth is the largest and most visited site on the Web providing doctor-approved health information about children from before birth through adolescence. Created by The Nemours Foundation’s Center for Children’s Health Media, the award-winning KidsHealth provides families with accurate, up-to-date, and jargon-free health information they can use.
http://kidshealth.org/parent/pregnancy_newborn/medical_problems/genetic_counseling.html
National Society of Genetic Counselors promotes the genetic counseling profession as a recognized and integral part of health care delivery, education, research and public policy.
www.nsgc.org
Partnership for Parents
The Partnership for Parents is a Web-based support network for parents of children with serious illnesses. The organization’s Web site is designed to be a haven where parents can feel the solace of kindred spirits while finding the information they need to cope with their situation and navigate their difficult journey.
www.partnershipforparents.org
Healthy Lifestyles
American Dietetic Association is the nation’s largest organization of food and nutrition professionals. ADA serves the public by promoting optimal nutrition, health and well-being.
http://www.eatright.org/Public/
American Heart Association offers information on diet and nutrition, exercise, and other lifestyle issues to help people stay healthy.
http://www.americanheart.org
American Medical Association, Adolescent Health Web Site offers a variety of information on various topics including injury prevention, violence and bullying, nutrition and fitness, alcohol, drug, and tobacco use, etc.
http://www.ama-assn.org/ama/pub/category/1947.html
Association of Maternal and Child Health Programs represents state public health leaders and others working to improve the health and well being of women, children, youth and families, including those with special health care needs. AMCHP accomplishes its mission through the active participation of its members and vital partnerships with government agencies, families and advocates, health care purchasers and providers, academic and research professionals, and others at the national, state and local levels.
http://www.amchp.org/
Bright Futures is a national health promotion initiative dedicated to the principle that every child deserves to be healthy and that optimal health involves a trusting relationship between the health professional, the child, the family, and the community as partners in health practice.
http://www.brightfutures.org/
Covering Kids & Families (CKF) works to reduce the number of uninsured children and adults who are eligible for public health care coverage programs but not enrolled. The organization operates through statewide projects in 45 states and the District of Columbia and more than 140 local community projects. In addition, 5 states have CKF liaison grants that provide opportunities to participate in the national CKF initiative.
http://coveringkidsandfamilies.org
HRSA Maternal and Child Health Bureau
The Maternal and Child Health Bureau is part of the U.S. Department of Health and Human Services Health Resources and Services Administration. The U.S. Congress enacted Title V of the Social Security Act, which authorized the Maternal and Child Health Services programs and provided a foundation and structure for assuring the health of American mothers and children.
http://mchb.hrsa.gov/
Konopka Institute for Best Practices in Adolescent Health
The Konopka Institute is built on a foundation of research that articulates what has been demonstrated to be effective in healthy youth development. Strategies based on the interrelatedness of youth health problems‚ a commitment to programs that work (“best practices”) or show promise of doing so (“best bets”)‚ and an understanding that adolescents must be viewed in the context of their families and their families in the context of neighborhoods and communities‚ are organizational hallmarks. Building upon these core values, the Konopka Institute is positioned to provide information‚ programs‚ and policy support to the youth-serving community.
http://www.allaboutkids.umn.edu/konopka/
The National Coalition for Lesbian, Gay, Bisexual an Transgendered Health
The National Coalition for LGBT Health is committed to improving the health and well-being of lesbian, gay, bisexual and transgender individuals and communities through public education, coalition building and advocacy that focuses on research, policy, education and training.
http://www.lgbthealth.net
The President’s Council on Physical Fitness
Fitness.gov is the health, physical activity, fitness and sports information Web site of the President’s Council on Physical Fitness and Sports. You can find out about the Council and its work, view our publications, and link to the resources of other government agencies as well as to health and fitness organizations.
www.fitness.gov
HIV/AIDS
TheBody.com is a comprehensive Internet resource offering HIV/AIDs information on more than 550 topic areas. The Body’s mission is to use the Web to lower barriers between patients and clinicians; demystify HIV/AIDS and its treatment; improve patients’ quality of life; and foster community through human connection.
www.thebody.com
Campaign to End Aids (C2EA)
The Campaign to End AIDS (C2EA) is a diverse, new coalition of people living with HIV/AIDS, their advocates and their loved ones. Together they are demanding that our leaders exert the political will to stop the epidemic in the U.S. and abroad, once and for all.
www.c2ea.org
HIV AIDS Information National Library on Medicine
A comprehensive AIDS information service is vital to enable people to combat the AIDS epidemic. Scientists, physicians, educators, and other health professionals need rapid access to the latest information on AIDS research, diagnosis, treatment, control, and prevention. Consumers require similar access to appropriate information for decision-making about their behavioral choices and treatment. Community-based organizations, clinics and other types of service providers also need access to high quality, accurate and timely information for their staff and clients. The National Library of Medicine (NLM), the world’s largest medical library, has been developing AIDS information services since the AIDS crisis began in 1980.
http://sis.nlm.nih.gov/hiv.html
HRSA HIV/AIDS Bureau
The HIV/AIDS Bureau (HAB) of the Health Resources and Services Administration (HRSA) was formed in August 1997 to consolidate all programs funded under the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act. The CARE Act was signed into law on August 15, 1990 to improve the quality and availability of care for people with HIV/AIDS and their families.
http://hab.hrsa.gov
Kaiser Family Foundation
The Henry J. Kaiser Family Foundation is a non-profit, private operating foundation focusing on the major health care issues facing the nation. The Foundation is an independent voice and source of facts and analysis for policymakers, the media, the health care community, and the general public.
http://www.kff.org/hivaids/index.cfm
National Association of People With AIDS
Founded in 1983, the National Association of People with AIDS is a non-profit membership organization that advocates on behalf of all people living with HIV and AIDS in order to end the pandemic and the human suffering caused by HIV/AIDS. We are the oldest national AIDS organization in the United States and the oldest national network of people living with HIV/AIDS in the world.
http://www.napwa.org
National Institutes of Health Medline Plus
MedlinePlus is a source of good health information from the world’s largest medical library, the National Library of Medicine. MedlinePlus has extensive information from the National Institutes of Health and other trusted sources on over 700 diseases and conditions. There are also lists of hospitals and physicians, a medical encyclopedia and a medical dictionary, health information in Spanish, extensive information on prescription and nonprescription drugs, health information from the media, and links to thousands of clinical trials.
http://www.nlm.nih.gov/medlineplus/aids.html
Office of Minority Health
The mission of the Office of Minority Health (OMH) is to improve and protect the health of racial and ethnic minority populations through the development of health policies and programs that will eliminate health disparities. OMH was established in 1985 by the U.S. Department of Health and Human Services (HHS). It advises the Secretary and the Office of Public Health and Science on public health program activities affecting American Indians and Alaska Natives, Asian Americans, Blacks/African Americans, Hispanics/Latinos, Native Hawaiians, and other Pacific Islanders.
http://www.omhrc.gov/hivaidsobservances/hivaidsinfo.html
Project Inform
Project Inform is a national nonprofit, community-based organization working to end the AIDS epidemic. Its mission is to inform people living with HIV, their caregivers and their healthcare and service providers about the treatment and monitoring of HIV disease; to advocate and facilitate research towards a cure and for appropriate policies, legislation and funding for HIV research treatment and care; and inspire people to make informed choices, take effective action in the fight against HIV and choose hope over despair.
www.projectinform.org
Treatment Access Expansion Project (TEAP)
The Treatment Access Expansion Project is committed to improving access to early and comprehensive treatment for individuals living with HIV/AIDS. As part of its mission, TEAP has created a Medicare Part D Toolkit available for downloading.
www.taepusa.org
Living With Illness
CancerCare®
CancerCare is the oldest and largest nonprofit agency dedicated to helping people face the many challenges of a cancer diagnosis. CancerCare provides free professional support services, including counseling, education, financial assistance and practical help, to people with cancer, their loved ones, and healthcare professionals across the country.
www.cancercare.org
Centers for Medicare & Medicaid Services (CMS)
The Centers for Medicare & Medicaid Services (CMS) is a Federal agency within the U.S. Department of Health and Human Services. CMS Administers the Medicare program and works in partnership with the States to administer Medicaid, the State Children’s Health Insurance Program (SCHIP), and health insurance portability standards.
www.cms.gov
Council of Nephrology Social Workers
Many people may be in early stages of kidney disease and not know where to find information or help. Once people with chronic kidney disease progress to kidney failure and require dialysis or a transplant, Medicare mandates that each dialysis or transplant patient have access to a masters level social worker. You can information about chronic kidney disease and the Council of Nephrology Social Workers (CNSW) by visiting their Web Site.
www.kidney.org/professionals/CNSW/index.cfm.
National Alliance for Caregiving
The National Alliance for Caregiving (NAC) is a non-profit coalition created in 1996 to support family caregivers and the professionals who serve them. NAC’s founding partners are the American Society on Aging, the Department of Veterans Affairs, AARP, the National Council on the Aging, and the National Association of Area Agencies on Aging. Current membership includes more than 40 national organizations.
www.caregiving.org
The National Pain Foundation was established in 1998 to advance functional recovery of persons in pain through information, education, and support. It’s mission is to be a credible and highly effective resources to empower all persons in pain, regardless of race, ethnicity, religion, or economic or social status, to improve their lives through education, advocacy, communications networks, and community participation.
www.painconnection.org
Partnership for Parents is a support network for parents of children with serious illnesses. The organization’s Web site is designed to be a haven where parents can feel the solace of kindred spirits while finding the information they need to cope with their situation and navigate their difficult journey.
www.partnershipforparents.org
U.S. Department of Labor Office of Worker’s Compensation Programs
The Department of Labor’s Office of Worker’s Compensation Programs administers four major disability compensation programs which provide wage replacement benefits, medical treatment, vocational rehabilitation, and other benefits to federal workers or their dependents who are injured at work or acquire an occupational disease.
Office of Workers’ Compensation Programs (OWCP)
Pain
American Pain Foundation
Founded in 1997, the American Pain Foundation is an independent nonprofit 501(c)3 organization serving people with pain through information, advocacy, and support. Our mission is to improve the quality of life of people with pain by raising public awareness, providing practical information, promoting research, and advocating to remove barriers and increase access to effective pain management.
www.painfoundation.org
American Chronic Pain Association
The mission of the American Chronic Pain association is to facilitate peer support and education for individuals with chronic pain and their families so that these individuals may live more fully in spite of their pain. The organization raises awareness among the health care community, policy makers and the public at large about issues of living with chronic pain. The association also offers support and information for people with chronic pain.
http://www.theacpa.org/
Cancer-Pain.org
Cancer-pain.org has been developed by ACOR (Association of Cancer Online Resources) with input and advice from patients, caregivers and an Advisory Board of health care professionals dedicated to providing the most advanced cancer pain relief. The organization’s aim is to help cancer patients receive the pain treatment they deserve.
