National Healthcare Organizations
The following is a list of national healthcare organizations that provide frequent updates, research, education, newsletters, general information, and various resources to visitors (for both patients and healthcare professionals) for some of the most common disabilities affecting AgrAbility clients.
ARTHRITIS AND BACK PAIN
ARTHRITIS FOUNDATION
Website:http://www.arthritis.org/
Summary: The Arthritis Foundation is the only national, voluntary health agency seeking the causes, cures, preventions, and treatments for the more than 100 forms of arthritis. The foundation’s mission is to improve lives through leadership in the prevention, control, and cure of arthritis and related diseases by providing grants to researchers to help find a cure, prevention, or better treatment for arthritis and providing a large number of community-based services nationwide to make life with arthritis easier.
Newsletter: Bimonthly
Spanish Website Version Available: http://www.arthritis.org/espanol/
JOHNS HOPKINS ARTHRITIS CENTER
Website: http://www.hopkins-arthritis.org/index.html
Summary: The Johns Hopkins Arthritis Center provides a high-quality, interactive, educational program about diseases that cause arthritis and their treatments. This Website focuses primarily on rheumatoid arthritis and osteoarthritis since these diseases serve as prototypes for inflammatory and degenerative joint diseases, respectively.
Newsletter: Quarterly
AMPUTATIONS
AMPUTEE COALITION OF AMERICA
Website: http://www.amputee-coalition.org/
Summary: The Amputee Coalition of America reaches out to people with limb loss and helps to empower them through education, support, and advocacy.
Newsletter: Bimonthly
AMPUTEE RESOURCE FOUNDATION OF AMERICA, INC.
Website: http://www.amputeeresource.org/
Summary: The organization’s mission to disseminate timely and useful information, to perform charitable services, and to conduct research to enhance productivity and quality of life for amputees. Key goals of the Website include reducing direct and indirect costs associated with limb loss; assisting amputees in returning to the workforce; and enabling a higher quality of life for those with limb loss. The Website is a great source for related links.
Newsletter: No
BLINDNESS OR VISION IMPAIRMENTS
AMERICAN FOUNDATION FOR THE BLIND
Website: http://www.afb.org/
Summary: 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.
Newsletter: Monthly
Spanish Section Available
LOW VISION CENTER
Website: http://www.lowvisioninfo.org/
Summary: A nonprofit organization that helps people with low vision maintain their independence. The Low Vision Center offers informational services and demonstrations of low vision aids, as well as strategies for dealing with low vision on a daily basis.
Newsletter: Quarterly
BRAIN INJURIES (TRAUMATIC AND ACQUIRED)
BRAIN INJURY ASSOCIATION OF AMERICA
Website: http://www.biausa.org/Pages/splash.html
Summary: By acting as a clearinghouse of community service information and resources, participating in legislative advocacy, facilitating prevention awareness, hosting educational programs and encouraging research, the Brain Injury Association of America and its affiliates work to reach the millions of individuals living with brain injury. All of the Association’s chartered state affiliates deliver core services in their communities, including education, advocacy, support, and prevention.
Newsletter: Yes
Spanish Website Version Available
CANCER
NATIONAL CANCER INSTITUTE
Website: http://www.cancer.gov/
Summary: The National Cancer Institute (NCI) 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. 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) and is the Federal Government's principal agency for cancer research and training.
Newsletter: Weekly
Spanish Website Version Available
AMERICAN CANCER SOCIETY
Website: http://www.cancer.org/docroot/home/index.asp
Summary: The American Cancer Society is the nationwide community-based voluntary health organization dedicated to eliminating cancer as a major health problem by preventing cancer, saving lives, and diminishing suffering from cancer, through research, education, advocacy, and service.
Newsletter: Yes, in the ACS News Center
Spanish / Asian Website Versions Available
CARDIAC PROBLEMS
AMERICAN HEART ASSOCIATION
Website: http://www.americanheart.org/
Summary: The American Heart Association is a national voluntary health agency whose mission is to reduce disability and death from cardiovascular diseases and stroke.
Newsletter: Yes
Spanish Website Version Available
CLEVELAND CLINIC HEART CENTER
Website: http://www.clevelandclinic.org/heartcenter/
Summary: The Cleveland Clinic Heart Center is the best Heart Center in America, according to U.S. News & World Report's annual survey. The website provides information, research articles, and educational tools for patients and healthcare professionals.
Newsletter: Quarterly
TEXAS HEART INSTITUTE
Website: http://www.texasheart.org/
Summary:The Texas Heart Institute is a nonprofit organization dedicated to reducing the devastating toll of cardiovascular disease through innovative and progressive programs in research, education, and improved patient care.
Newsletter: Quarterly
Spanish Website Version Available
CEREBRAL PALSY
UNITED CEREBRAL PALSY
Website: http://www.ucp.org/
Summary: UCP's mission is to advance the independence, productivity, and full citizenship of people with disabilities through an affiliate network through the development of forward-thinking programs, information and referral service, legislative advocacy, technology initiatives, and research. Direct service provision for people with disabilities and their families is offered through UCP affiliates, who serve more than 30,000 children and adults with disabilities and their families every day through programs such as therapy, assistive technology training, early intervention programs, individual and family support, social and recreation programs, community living, state and local referrals, employment assistance, and advocacy.
Newsletter: 4 different newsletters (2 monthly and 2 weekly)
Spanish Website Version Available
CHRONIC PAIN
AMERICAN CHRONIC PAIN ASSOCIATION
Website: http://www.theacpa.org/
Summary: The ACPA’s mission is to provide peer support and teach coping skills to people suffering from chronic pain. The ACPA offers programs, materials, and services that give support, encouragement, information, and skills that can aid a person with pain to regain control of his or her life.
Newsletter: Quarterly
DEAFNESS OR HEARING IMPAIRMENTS
BETTER HEARING INSTITUTE
Website: http://www.betterhearing.org/
Summary: BHI is a not-for-profit corporation that promotes the benefits of better hearing. Television, radio, and print PSAs have answered basic questions about hearing loss, described various treatment options, and tried to motivate consumers to seek help for their hearing loss earlier rather than later in their lives. Website provides guides, various resources, solutions, education, and research materials on hearing impairments.
Newsletter: No
DIABETES
AMERICAN DIABETES ASSOCIATION
Website: http://www.diabetes.org/home.jsp
Summary: The American Diabetes Association the nation's leading nonprofit health organization providing diabetes research, information, and advocacy. Its mission is to prevent and cure diabetes and to improve the lives of all people affected by diabetes through research, publishing scientific findings, providing information, and other services to people with diabetes, their families, health professionals, and the public. The Association is also actively involved in advocating for scientific research and for the rights of people with diabetes.
Newsletter: 8 different newsletters
Spanish Website Version Available
HEALTH LITERACY
PARTNERSHIP FOR CLEAR HEALTH COMMUNICATIONS
Website: http://www.npsf.org/askme3/
Summary: The Partnership for Clear Health Communication is a coalition of national organizations that are working together to promote awareness and solutions around the issue of low health literacy and its effect on health outcomes. The Partnership serves consumers, public health officials, health care professionals, health educators, literacy specialists, patient advocates and caregivers, health associations and policymakers. The Partnership and its individual members are committed to offering free and low-cost resources and programs that deliver patient information, medical education and practice management tools to care and information providers.
Newsletter: Monthly
MENTAL RETARDATION
THE ARC OF THE UNITED STATES
Website: http://www.thearc.org/netcommunity/
Summary: The Arc is the national organization of and for people with mental retardation and related developmental disabilities and their families. It is devoted to promoting and improving supports and services for people with mental retardation and their families. The association also fosters research and education regarding the prevention of mental retardation in infants and young children.
Newsletter: Quarterly
MULTIPLE SCLEROSIS
NATIONAL MULTIPLE SCLEROSIS SOCIETY
Website: http://www.nationalmssociety.org
Summary: The mission of the National Multiple Sclerosis Society is to end the devastating effects of MS through its network of chapters nationwide by promoting research, education, advocacy on critical issues, and organizing a wide range of programs—including support for the newly diagnosed and those living with MS over time. NMSS is a leader in MS research, services for people with MS, professional education programs, and MS advocacy through extensive research to find the cause, cure, and improved treatments of the disease.
Newsletter: 1 bi-monthly for families and 1 quarterly just for teens
MUSCULAR DYSTROPHY
MUSCULAR DYSTROPHY ASSOCIATION
Website: http://www.mda.org/
Summary: The Muscular Dystrophy Association is a voluntary health agency comprised of a dedicated partnership between scientists and concerned citizens aimed at conquering neuromuscular diseases that affect more than a million Americans. MDA combats neuromuscular diseases through programs of worldwide research, comprehensive medical and community services, and far-reaching professional and public health education.
Newsletter: Bimonthly
Spanish Website Version Available
POST-POLIO SYNDROME
POST-POLIO HEALTH INTERNATIONAL
Website: http://www.post-polio.org/
Summary: Post-Polio Health International's mission is to enhance the lives and independence of polio survivors and home ventilator users through education, advocacy, research, and networking.
Newsletter: Quarterly with $15/yr membership
RESPIRATORY PROBLEMS
ASTHMA & ALLERGY FOUNDATION OF AMERICA
Website: http://www.aafa.org/
Summary: The AAFA, a not-for-profit organization, is the leading patient organization for people with asthma and allergies. AAFA provides practical information, community based services, and support through a national network of chapters and support groups. AAFA develops health education, organizes state and national advocacy efforts, and funds research to find better treatments and cures.
Newsletter: Monthly
Spanish Website Version Available
AMERICAN LUNG ASSOCIATION
Website: http://www.lungusa.org/
Summary: The American Lung Association is the oldest voluntary health organization in the United States and its mission is to prevent lung disease and promote lung health, with special emphasis on asthma, tobacco control, and environmental health.
Newsletter: 7 different newsletters
Spanish Website Version Available
SPINAL CORD INJURY
THE NATIONAL SPINAL CORD INJURY ASSOCIATION
Website: http://www.spinalcord.org/
Summary: The National Spinal Cord Injury Association is the nation's oldest and largest civilian organization dedicated to improving the quality of life for hundreds of thousands of Americans living with the results of spinal cord injury and disease (SCI/D) and their families. At NSCIA, the goal is to educate and empower survivors of spinal cord injury and disease to achieve and maintain the highest levels of independence, health, and personal fulfillment. NSCIA fulfills this mission by providing an innovative Peer Support Network and by raising awareness about spinal cord injury and disease through education.
Newsletter: Quarterly
PARALYZED VETERANS OF AMERICA
Website: http://www.pva.org/
Summary: The Paralyzed Veterans of America, a congressionally chartered veterans service organization, has developed a unique expertise on a wide variety of issues involving the special needs of veterans of the armed forces who have experienced spinal cord injury or dysfunction.
PVA is a leading advocate for: quality health care for our members, research and education addressing spinal cord injury and dysfunction, and benefits available as a result of our members’ military service.
Newsletter: Monthly
UNITED SPINAL ASSOCIATION
Website: http://www.unitedspinal.org/
Summary: United Spinal Association is dedicated to enhancing the lives of all individuals with spinal cord injury or disease by ensuring quality health care, promoting research, advocating for civil rights and independence, educating the public about these issues, and enlisting its help to achieve these fundamental goals.
Newsletter: Monthly
Spanish / French / Italian / German / Portuguese Website Versions Available
STROKE
AMERICAN STROKE ASSOCIATION
Website: http://www.strokeassociation.org/
Summary: The American Stroke Association is a division of the American Heart Association that focuses on reducing risk, disability, and death from stroke through research, education, fund raising, and advocacy. The American Stroke Association spends more money on stroke research and programs than any other organization except the federal government.
Newsletter: Bimonthly
Spanish Website Version Available
NATIONAL STROKE ASSOCIATION
Website: http://www.stroke.org/
Summary: NSA set the precedent by implementing the first-ever consensus statement on guidelines for stroke prevention, which was published in the prestigious Journal of the American Medical Association (JAMA). Through NSA’s work, those guidelines are now considered the gold standard for health care providers who educate their patients at risk for stroke. NSA is breaking ground in stroke treatment by implementing new stroke center guidelines in American hospitals and developing centers of excellence. In the rehabilitation arena, NSA is forging closer alliances with facilities, support groups, survivors and their families, and caregivers to provide best practices, services and advocacy on their behalf.
Newsletter: Bimonthly
Spanish / French Website Versions Available
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