Online Resources: National Organizations

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Aging

American Geriatrics Association - one of the largest professional organization of health care providers. Includes membership, educational and publication information.
American Society on Aging - Enhancing the skills and knowledge of those working with older adults and their families.
Families USA - a national nonprofit, non-partisan organization dedicated to the achievement of high-quality, affordable health and long-term care for Americans. Good information on national healthcare policy.
Gerontological Society of America - multidisciplinary society for professionals in the field of aging. Focuses on promoting the scientific study of aging.
International Longevity Center - a non-profit, non-partisan reseach and education organization helping societies address longevity population aging in postitive productive ways.
National Consumer Voice for Quality Long Term Care (formerly National Citizens' Coalition for Nursing Home Reform - NCCNHR) - a national consumer advocacy group that educates consumers about how to get good care in nursing homes and advocates for policies that will improve conditions for nursing home residents.
National Council on the Aging - help older people remain healthy and independent, find jobs, increase access to benefits programs, and discover meaningful ways to continue contributing to society.
National Institute on Aging - research profiles, funding, health information and publications.

 

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Caregiver Resources

Family Caregiver Alliance - premier website for families, caregivers, policy makers, providers and media to access information on caregiving. Free reports, fact sheets, newsletters, support groups, and care advice.
Agis.com   - broad range of information for caregivers. Checklists, articles and "Ask the Expert."
Arch National Respite Network and Resource Center - supports service providers and families through training, technical assistance, evaluation, and research.
Caregiver.com - articles on caregiving, caregivers, and home care workers.
Caring Today - a magazine and website—provides useful advice and how-to articles on range of caregiving topics.
National Participant Network - NPN is seeking new members (participants and caregivers) to participate in the NPN efforts with the ultimate goal of strengthening the local, state, and national participant voice for self-direction.
National Resource Center for Participant Directed Services -Drawing on over a decade of experience with participant direction, the National Resource Center for Participant Directed Services serves to assist all programs, regardless of funding source, to develop and improve their participant-directed options.
NextStepInCare.org  - provides information and advice to help family caregivers and health care providers plan safe and smooth transitions for patients.
Paying for Senior Care  - a database of financial and care options that includes federal and state, non-profit, insurance, home equity, veterans, respite care and other resources.
Powerful Tools for Caregiving - An nationally recognized education program and how-to book - provides the resources needed to care for yourself while caregiving for someone else. The training offers tools and strategies for family caregivers and professionals to better handle challenges unique to caregiving.
StrengthforCaring.com  - an online resource and community for family caregivers.
Toghers - a resource and community for caregivers.
WellSpouse Foundation - national nonprofit membership organization which gives support to wives, husbands, and partners of the chronically ill and/or disabled.

 

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Directories and Resource Locators

Family Care Navigator  - Locate caregiving support resources in all 50 States; include glossary and FAQs. 
Benefits Checkup - helps thousands every day to find programs for people ages 55 and over that may pay for some of their costs of prescription drugs, health care, utilities, and other essential items or services.
Directory of Web and Gopher Sites on Aging - from the Administration on Aging's Department of Health and Human Services.
Eldercare Locator - a nationwide, directory assistance service designed to help older persons and caregivers locate local support resources for aging Americans to help them remain independent in their own homes.
GetPalliativeCare.org  - a palliative care resource created for patients and families that also includes sections for medical practitioners and policymakers. The site is easy to navigate and provides clear, comprehensive palliative care information for people coping with serious, complex illness.
GeroInformatics Workgroup at the Wayne State University's Institute of Gerontology - resource for researchers, educators, practitioners, and others interested in aging and older individuals.
National Academy of Elder Law Attorneys - search for an elder law attorney near you.
National Association of Professional Geriatric Care Managers - a non-profit, professional organization of practitioners whose goal is the advancement of dignified care for the elderly and their families.
Senior Sites - source of non-profit housing and services for seniors.

 

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Disease Specific Organizations

ALS
The ALS Association (National) - up-to-date information and education materials on ALS.

Alzheimer's Disease/Dementia
Alzheimer's Association - site with updated research information, chapters, caregiver information and public policy information.
Alzheimer's Disease Education and Referral Center - site with Alzheimer's information, research, and caregiving suggestions.
BrightFocus Foundation - nonprofit charitable organization dedicated to funding research on age-related and degenerative diseases and educating the public about these diseases.
Lewy Body Dementia Association - information for patients with Lewy Body Dementia and their caregivers.
Pick's Disease Support Group - articles, support groups, and resources for patients.

Ataxia
National Ataxia Foundation - information about and support for people with ataxia.

Brain Injury
BrainandSpinalCord.org - resource for brain injury and spinal cord injury survivors.
Brain Injury Association of America - national program with a network of more than 40 chartered state affiliates, as well as hundreds of local chapters providing information, education and support to individuals, families and professionals affected by brain injury.
Brain Injury Resource Center - information, skill-building and discussion groups. Extensive links to resources, rehab, and research sites, as well as lay and professional journals.
Defense & Veterans Brain Injury Center - Serves active duty military, their dependents and veterans with traumatic brain injury. Offers evaluation, treatment, follow-up care, educational materials and research.
Tamara Greenspan Head Injury Collection - Free resource library, with many good books on brain injury available through the interlibrary loan system. 
The Traumatic Brain Injury Model Systems - created to demonstrate the benefits of a coordinated system of neurotrauma and rehabilitation care and conduct innovative research on all aspects of care for those who sustain traumatic brain injuries.

Brain Tumor/Cancer
American Brain Tumor Association - Provides information about brain tumors, treatment options, clinical trials, and living with a brain tumor.
American Cancer Society - dedicated to eliminating cancer as a major health problem by preventing cancer, saving lives, and diminishing suffering.
CancerCare - resources and information related to costs for caring for those with cancer.
Cancer.com - a web resource for people touched by cancer including patients and their families, caregivers and health providers.  The site was developed as part of Ortho Biotech's dedication to cancer research and education.  Cancer.com was created to facilitate quick and easy searches for cancer information and includes a comprehensive listing of credible cancer web sites.  The site content is reviewed and approved by an advisory board of cancer advocates and medical experts. 
National Brain Tumor Foundation - non-profit organization serving people whose lives are affected by brain tumors.
National Cancer Institute - official site for the National Institute of Health's principal agency for cancer research.
StrengthforCaring.com - online resource and community for family caregivers.

Cerebral Palsy
United Cerebral Palsy Association - world's premier gateway to disability resources on the Internet and is a network for people with disabilities,

Creutzfeldt-Jacob Disease
Creutzfeldt-Jacob Disease Foundation - offers support, information and guidance to those dealing with the degenerative neurological disorder CJD.

Epilepsy
Epilepsy Foundation of America - serving people with epilepsy and their caregivers through services, information.

HIV/AIDS Dementia
National Prevention Information Network AIDS website -
HIV InSite  - university-based, global Internet resource on HIV/AIDS that incorporates comprehensive,
multidisciplinary information on basic science, treatment, prevention, and policy, and is one of the world’s most visited HIV/AIDS Web sites.

Huntington's Disease
Hereditary Disease Foundation
Huntington's Disease Society of America, Inc.

Hydrocephalus
Hydrocephalus Association

Mesothelioma & Asbestos
Mesothelioma & Asbestos Awareness Center  - information related to pleural mesothelioma cancer, with information for caregivers and families of mesothelioma patients.
Mesothelioma Cancer Center
The Mesothelioma Cancer and Asbestos Resource Center - provides resources on all aspects of malignant mesothelioma—a cancer uniquely linked to just a brief exposure to asbestos.

Multiple Sclerosis
National Multiple Sclerosis Association of America
National Multiple Sclerosis Society

 

Parkinson's Disease
American Parkinson Disease Association, Inc.
National Parkinson Foundation

Spinal Cord Injury
Christopher Reeves Paralysis Foundation
National Spinal Cord Injury Association

Stroke
American Heart Association National Center
American Stroke Association
National Stroke Association
National Institute of Neurological Disorders and Stroke

Tourette's Syndrome
Tourette's Syndrome Association, Inc.

 

Other Disease Related
Alliance of Genetic Support Groups
American Academy of Neurology
American Chronic Pain Association
Chronic Obstructive Pulmonary Disease (COPD)
Human Genome Project Information
National Institute on Deafness and Other Communication Disorders

 

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Elder Abuse

MedlinePlus: Elder Abuse  - trusted health information on elder abuse from the U.S. National Libarary of Medicine.
National Association for the Prevention of Elder Abuse - information and publications on how to recognize and report elder abuse.
National Center on Elder Abuse - offers fact sheets, news, publications, statistics and resources.

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Federal Government Agencies

Administration on Aging - aging news, aging pages, funding information, Older American Act programs, statistical information on older adults.
Centers for Disease Control and Prevention's  National Center for Health Statistics: Aging Activities - an agency of the United States Department of Health and Human Services.
Centers for Medicare and Medicaid Services - the federal agency that administers the Medicare, Medicaid and Child Health Insurance Programs.
Department of Veterans Affairs - Veterans Administration benefits, facilities, special programs.
Food & Drug Administration's Office of Women's Health - science-based information about all products currently approved by the FDA to treat women's health conditions.
Social Security Online - information about benefits, Personal Earnings and Benefit Earning Statement.
National Institute of Health - Health Information Index, Consumer Health Information, Medline and Grateful Med access, Clinical Alerts.
National Institute of Mental Health - provides information from the Federal agency that conducts and supports research on mental illnesses.

 

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Health Resources

Alliance for Health Reform  - a nonpartisan, nonprofit group helping educate elected officials, journalists and other shapers of public opinion about the roots of the nation’s health care problems and the trade-offs posed by various proposals for change.
ClinicalTrials.gov - comprehensive registry of clinical trials for serious illnesses. Sponsored by the National Library of Medicine, the database has 4,000 studies at 47,000 sites across the country.
Healthfinder - a mega site for health information sponsored by the Department of Health and Human Services. Excellent links section.
MEDLINEplus® - comprehensive coverage of over 600 health topics. Features include: newswire updates, tutorials with sound and pictures, medical encyclopedia, drug information, directories of health facilities and professionals, and more.
MedicineNet - information for diseases, treatments, procedures, drugs and more.
National Organization for Rare Disorders  - a federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases.
PubMed - provides access, free of charge, to MEDLINE. Over 40 millionsearches done each month. Includes state-of-the-art retrieval features such as "related articles," links to related databases, and links to publishers' full-text articles.

 

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Legislation and Advocacy

National Governor's Association - bipartisan organization of the nation's governors--promotes visionary state leadership, shares best practices and speaks with a unified voice on national policy.
Thomas - federal legislation tracking. Daily updates and full-text bills available.
White House's ExpectMore.com - developed by the U.S. Office of Management and Budget and Federal agencies to assess the performance of every Federal program.
White House Citizen's Handbook - a guide to the U.S. government.

 

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Long-term Care

American Association of Homes and Services for the Aging
Home Care and Hospice Agency Locator
National Clearing House for Long Term Care
National Long Term Care Ombudsman Resource Center

 

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Technology

Center for Accessible Technology - provides useful information on various types of technology as well as comparative reviews, and links to other resources.
EASI (Equal Access to Software and Information) - provides information on assistive technology as well as links to product information. 
Virtual Assistive Technology Center - information on resources and also offers downloadable software.
BIOTN (The Best Information on the Net) - site developed by librarians at O'Keefe Library at St. Ambrose University. The site offers information on adaptive technology, disability law, organizations and institutes and links to other useful sites.

Computer manufacturers also have sites that offer information on accessible technology. Some of the larger companies include Apple Computer's Disability Resources web site and Microsoft's Accessibility and Disabilities site.

Date: 
Friday, December 20, 2013

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