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WHO CARES: Chronic Illness in America
WHO CARES: Chronic Illness in America

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Explore the Frontiers of Chronic Care

The Web has a wide variety of sites devoted to the topics covered by "Who Cares: Chronic Illness in America." Below we've listed a number of excellent resources on chronic care and chronic illnesses. On these sites you can find medical news stories, the latest research on various diseases, and online communities. They are sponsored by professional associations, patient groups and the federal government.

Sites Releated to Chronic Care and Illness
Disease-Related Sites



SITES RELATED TO CHRONIC CARE AND ILLNESS
(* denotes a Fred Friendly Seminars partner)

The American Geriatrics Society*
A nationwide, not-for-profit organization and the premier professional organization of health care providers, dedicated to improving the health and well-being of all older adults.

Center For Health Care Strategies
This nonprofit, policy resource center promotes high quality health care services for low-income populations and people with chronic illnesses and disabilities.

Center for Research on Chronic Illness
Located at the University of North Carolina, the CRCI is one of nine centers funded by the National Institute of Nursing Research to promote excellence in nursing research.

Chronic Disease Prevention
A site sponsored by the U.S. Department of Health and Human Services.

Empowering Caregivers
Empowering Caregivers' Web site provides a safe, nurturing site for all caregivers with emotional and spiritual support and a vast amount of both online and off-line resources for caregivers.

Encourage
A site for teens with chronic illnesses.

Faith in Action*
A national program of the Robert Wood Johnson Foundation, Faith in Action makes grants to volunteers representing many religious faiths who care for chronically ill people in their community.

Family Caregiver Alliance/National Center on Caregiving*
This organization provides a public voice for caregivers, illuminating the daily challenges they face, offering them assistance and championing their cause through education, services, research and advocacy.

Family Voices*
Family Voices believes that children with special health needs face common problems caused by fundamental inadequacies in our health care system.

Foundation for Health in Aging*
A foundation that advocates on behalf of older adults and their special needs. This site offers information on preventive care, self-responsibility and independence, and connections to family and community.

HealingWell.com
This site features a useful portal for information about specific chronic illnesses.

Howard University College of Medicine*
Focusing on the needs of the African American community, Howard University trains students to become competent, compassionate physicians who deliver care in communities having a shortage of health personnel.

Improving Chronic Illness Care
A project of the Robert Johnson Wood Foundation.

The Invisible Disabilities Advocate
A personal site devoted to helping people understand chronic illness.

Long-Term Care Provider.com
A commercial site devoted to long-term health care needs.

National Academy of Social Insurance*
NASI works to enhance the public's understanding of social insurance systems and related social assistance and private employee benefits.

National Association of School Nurses*
A group promoting excellence in school health, prevention of illness and disability, and the early detection and correction of health problems.

National Business Coalition on Health
The NBCH spreads tenets and practical applications of community health reform to regions with interested employers and start-up groups.

National Chronic Care Consortium*
A mission-driven organization of leading-edge health networks dedicated to transforming the delivery of chronic care services.

National Family Caregivers Association (NFCA)*
This association provides support to family caregivers and publicizes caregivers' needs.

National Foundation for the Treatment of Pain
A not-for-profit organization providing support for patients with intractable pain, their families, friends and physicians.

National Health Council*
An organization dedicated to improving the health of all people, particularly those with chronic diseases and/or disabilities.

National PACE Association (NPA)*
A nonprofit membership organization representing the interests of almost 60 chapters. These organizations share the goal of promoting the availability of quality, comprehensive, and cost-effective health care services to frail, older adults.

Older Women's League*
A group that strives to improve the status and quality of life for midlife and older women.

Partnership for Solutions*
An initiative sponsored by Johns Hopkins University and the Robert Johnson Wood Foundation to improve the care and quality of life for Americans with chronic health conditions.

Research in Continuing/Chronic Care
Sponsored by the University of Calgary, this group supports and disseminates research about chronic illness and care.

Rest Ministries
A non-profit Christian organization that exists to serve people who live with chronic illness or pain, and their families.

Role of Nutrition in Chronic Disease Care
From the American Academy of Family Physicians, this site features articles in PDF format about how nutritional habits impact certain chronic illnesses.

The Rosalynn Carter Institute for Human Development*
Formed in honor of First Lady Rosalynn Carter in 1987, RCI promotes the mental health and well-being of individuals, families, and professional caregivers.

Shepherd's Centers of America*
Created in 1972, this interfaith, non-profit umbrella organization coordinates nearly 100 independent centers around the nation. It is a ministry by and for older adults of all faiths to enrich their later years with opportunities for service to others, self expression, meaningful work and close friendships.

WE Media Inc.*
This group is revolutionizing access for millions of people with disabilities, their families and friends through print, interactive, broadcast and wireless communications.

When Someone You Know Has a Chronic Illness
From KidsHealth.org, sponsored by the Nemours Foundation.



DISEASE-RELATED WEB SITES

Allergies

National Institute of Allergy and Infectious Diseases
Part of the National Institutes of Health, NIAID is a clearinghouse for scientists conducting research on the diagnosis, treatment, and prevention of immunologic and allergic diseases.

Calgary Allergy Network
A network devoted to providing practical information and resources to anyone dealing with asthma and allergies, particularly potentially life-threatening allergies.

American Academy of Allergy, Asthma and Immunology
This site features a physician search referral engine, a media hub and a patient resource center.

The Allergy Report
Sponsored by the American Academy of Allergy, and Immunology, this online publication bills itself as a manual for primary care health professionals.

Alzheimer's Disease

Alzheimer's Disease Education and Referral Center
Sponsored by the National Institutes of Health, the site lists NIH Alzheimer's centers and provides links to fact sheets and federal resources. It also features a bibliographic database and a calendar of events related to Alzheimer's.

The Alzheimer's Association
Comprised of a network of chapters, the Alzheimer's Association is one of the largest voluntary organizations studying the disease and providing support to caregivers.

Alzheimer Europe
This site, which provides resources on dementia, has been translated into eleven languages.

Arthritis

The Arthritis Foundation
This foundation connects users with events, treatments, research, advocacy and goods related to arthritis. A zip code search provides information on the nearest Foundation chapter.

Arthritis National Research Foundation
A private foundation that funds researchers seeking to discover new knowledge for the prevention, treatment and cure of arthritis.

National Institute of Arthritis and Musculoskeletal and Skin Diseases
Sponsored by the National Institutes of Health, this page offers news, events and fact sheets, plus information on patient enrollment in clinical trials.

Asthma

Allies Against Asthma
Sponsored by the Robert Wood Johnson Foundation, Allies Against Asthma is developing a resource bank on its site to provide easy access to experts, training materials and community resources. Site visitors can view video clips from AAA coalition members.

Asthma and Allergy Foundation of America (AAFA)*
Founded in 1953, AAFA has a national network of 13 chapters and more than 120 educational support groups to provide community-based programs. Users can submit questions to the site's "Ask the Allergist" feature, and books and materials can be ordered.

Allergy & Asthma Network Mothers of Asthmatics*
A non-profit organization that uses advocacy, education, community outreach and research to work towards their goal of eliminating suffering and death caused by allergies and asthma.

American Academy of Allergy, Asthma and Immunology
This site features a physician search referral engine, a media hub and a patient resource center.

Bipolar disorder

Bipolar Disorders Portal
A community site that features book reviews, links to articles, resources and other Web sites about bipolar disorder.

Cerebral Palsy

United Cerebral Palsy*
A national organization with 114 affiliates in 41 states, UCP is one of the largest health charities in the United States serving more than 30,000 children and adults with disabilities and their families.

Chronic Bronchitis

Chronic Bronchitis
A site by the American Lung Association that features a section called "Living with lung disease."

Chronic Bronchitis: Primary Care Management
An article from the American Academy of Family Physicians.

Chronic Obstructive Pulmonary Disease

The Chest Foundation of the American College of Chest Physicians*
Established in 1996, this group creates educational programs, supports research and raises awareness regarding chest diseases and prevention.

MedLine Plus
A portal-style page of information disease from the National Library of Medicine regarding chronic obstructive pulmonary. The site is sponsored by the National Institutes of Health.

Cirrhosis

The USC Liver Transplant Program and Center for Liver Disease
Sponsored by the University of Southern California, the site includes a patient's guide to liver transplant surgery.

The PBC Foundation
Support, research and information about Primary Biliary Cirrhosis.

The PBCers Organization
Supported by the American Liver Foundation, this site has a variety of links to information and resources related to liver disease.

Depression

National Depressive and Manic-Depressive Association
Founded in 1986 and consisting of 275 chapters, NDMDA provides support and information for persons with depressive and manic-depressive illness, and their families.

Depression-Screeing.org
Sponsored by the National Mental Health Association, this site has a confidential online test to indicate a user's level of depression.

MedlinePlus -- Depression
A portal-style page devoted to information about depression from the National Library of Medicine.

Developmental Disabilities

Administration on Developmental Disabilities
From the U.S. Department of Health and Human Services, the site features a clickable U.S. map, locating disability resources by state.

Protection and Advocacy
Home of the nationwide network of congressionally mandated, legally-based disability rights agencies.

Diabetes

American Diabetes Association*
News, recipes, tip of the day and resources to help users find local help.

Do Your Level Best
From the NIH-sponsored National Institute of Diabetes and Digestive and Kidney Diseases, this page contains tips on how to take care of diabetes and how to prevent some of the serious problems that the disease can cause.

Emphysema

American Lung Association -- Emphysema
Topics include symptoms, treatment and prevention.

National Emphysema Foundation
Founded in 1971, NEF strives to improve the quality of life of those with emphysema, asthma, and related diseases.

National Emphysema Treatment Trial
From the National Institutes of Health, a page detailing the first multi-center clinical trial designed to determine the role, safety, and effectiveness of bilateral lung volume reduction surgery (LVRS) in the treatment of emphysema.

Endometriosis

Endometriosis.org
This site contains information about the video "Endometriosis: The Inside Story."

The Endometriosis Association
A non-profit, self-help group founded to disseminate information to women and girls with endometriosis.

Epilepsy

Epilepsy Foundation
Founded in 1968, this foundation has over 60 affiliate groups.

Glaucoma

The Glaucoma Foundation
This site includes a calendar of glaucoma-related events plus many other resources and features.

Glaucoma Research Foundation
A voluntary health agency dedicated to protecting the sight and independence of people with glaucoma.

National Eye Institute
A glaucoma site sponsored by the National Institutes of Health.

Hearing Impairment

What Hearing Impairment Is
A site sponsored by the Nemours Foundation, a nonprofit organization devoted to children's health.

Deafness Research Foundation
This group has launched a five-year public outreach and education program to ensure that Americans, especially children, will benefit from research breakthroughs and enjoy a lifetime of hearing.

Deafness and Family Communication Center
A group that provides clinical services for deaf or hard-of-hearing children and adolescents, seeking to promote their mental health and well-being.

National Institute on Deafness and Other Communication Disorders
A site sponsored by the National Institutes of Health.

Heart Disease

American Heart Association National Center
This AHA site includes risk assessment for heart attack and stroke, resources for advocates and scientists, and a "Heart and Stroke A-Z" guide.

Heart to Heart Volunteers
A volunteer support program for heart patients and caregivers with an online newsletter.

National Heart, Lung and Blood Institute
A site sponsored by the Department of Health and Human Services.

Hepatitis C

Chronic Hepatitis C: Current Disease Management
From the National Institutes of Health, this site offers resources for those suffering from hepatitis C.

Centers For Disease Control
Sponsored by the National Center for Infectious Diseases, this site has information on hepatitis C and other diseases.

High Blood Pressure

High Blood Pressure
Sponsored by the American Heart Association, this site includes a chart to measure acceptable blood pressure levels.

High Blood Pressure -- AHA
Another high blood pressure page from the AHA.

MEDLINEplus -- High Blood Pressure
Sponsored by the American Library of Medicine.

Human Immunodeficiency Virus (HIV)

HIV/AIDS Resource Center
From the Journal of the American Medical Association, this site contains treatment reports, a library, and a "Best of the Net" section.

Project Inform
An organization dedicated to providing reliable information about AIDS and its treatment since 1985.

AIDS Treatment Data Network
This site includes a directory of clinical trials.

HIVinSite
A site containing up-to-date information on treatment and clinical trials from the University of San Francisco.

Kidney Disease

National Institute of Diabetes and Digestive and Kidney Diseases
A site sponsored by the National Institutes of Health.

National Kidney Foundation
Information on kidney disease for patients and doctors.

American Association of Kidney Patients
For 30 years, this group has striven to help patients and their families cope with the emotional, physical and social impact of kidney failure.

Lou Gehrig's Disease (Amyotrophic Lateral Sclerosis)

Doctor's Guide -- ALS
Medical news and alerts, plus links to discussion and news groups.

ALS Assocation
This site features a physician's list to put patients in touch with specialists.

ALS Survivors Guide
Guide offers resources and information for patients and caregivers.

Lupus

Lupus Foundation of America
This site includes a listing of chapters around the United States, plus links to online communities and news groups.

Systemic Lupus Erythematosus
A site sponsored by the National Institutes of Health.

Living With Lupus
Features support groups, diets and nutrition, and personal stories.

Lyme Disease

Lyme Disease Foundation
Winner of an award from the National Institutes of Health for increasing public awareness of Lyme Disease.

Lyme Disease Network
A non-profit foundation focused on the prevention and treatment of Lyme disease. Includes links to support groups and a bulletin board for online discussion.

American Lyme Disease Association
An association dedicated to the prevention, diagnosis, treatment and control of Lyme disease and other tick-borne infections.

Migraine

Migraine Information Center
A site from the Journal of the American Medical Association.

Migraine Awareness Group
From the National Migraine Association, a site to support Migraine sufferers, their families, and co-workers.

Multiple Sclerosis

MS MOMS
A support group for women and mothers with MS.

National Multiple Sclerosis Society*
An organization dedicated to providing accurate and timely information to people with MS, their families, and caregivers.

MS Support Forum
A moderated all-day support group provided by MedSupport FSF International.

The Multiple Sclerosis Assocation of America
An international non-profit charitable organization serving those with MS and their families.

Orthopedic Impairments

Strategies for Teaching Students With Motor/Orthopedic Impairments

Osteoporosis

Osteoporosis Online
This site features a calculator to test whether you are getting enough calcium.

Foundation for Osteoporosis Research and Education
A non-profit resource center dedicated to preventing osteoporosis through research and education of the public and medical community. Includes educational videos.

Paralysis of the Extremities

Christopher Reeve Paralysis Foundation
A joint venture of the Christopher Reeve Foundation and the American Paralysis Foundation.

Parkinson's Disease

Parkinson's Disease Foundation
This site features news, "ask the expert", and an email newsletter.

Awakenings
An Internet forum for Parkinson's patients and caregivers.

Parkinson's Disease Caregiver Information
A site from the National Parkinson Foundation.

Psoriasis

National Psoriasis Foundation
A charitable membership organization comprised of people who have psoriasis and psoriatic arthritis, their family members, friends, physicians, nurses, researchers and corporations.

Questions and Answers about Psoriasis
A site from the National Institutes of Health.

Schizophrenia

Schizophrenia.com
An information and support center for schizophrenia.

National Alliance for Research on Schizophrenia and Depression
Formed in 1986, the group calls itself "the largest non-government, donor-supported organization that distributes funds for brain disorder research."

Schizophrenia
A backgrounder from the National Institute of Mental Health.

Schizophrenia -- Your Complete Well-Connected Guide
A guide produced by experts at Harvard Medical School and Massachusetts General Hospital.

Sinusitis

Sinusitis Fact Sheet
A site from the National Institute of Allergy and Infectious Diseases.

MEDLINEplus -- Sinusitis

Stroke

National Stroke Association
A group dedicated to education, services and community-based activities in prevention, treatment, rehabilitation and recovery from strokes.

American Stroke Association
Sponsored by the American Heart Association, this group provides resources for doctors, patients and their caregivers.

National Institute of Neurological Disorders and Stroke
Sponsored by the National Institutes of Health, this site features news and resources, plus links to studies that are seeking patients.

Thyroid Condition

American Thyroid Association
Founded in 1923, ATA is a professional society of experts focused on research and treatment of thyroid pathophysiology.

Thyroid-Info
A site for thyroid patients and advocates featuring a variety of news and information links.

FocusOnThyroid.com
A commercial health and information site from MedicineNet.com.

Our Partners

Be sure to visit Our Partners to meet the organizations working with Fred Friendly Seminars on chronic care issues.
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