4-COPD organizations and information sources

Resources for COPD: A life challenge

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The American Lung Association

1740 Broadway, New York, NY 10019, 1-800-586- 4872. The American Lung Association—For health care professionals and patients. Info includes asthma, tobacco control, air quality, lung diseases A to Z, occupational health, school programs, programs & events, donation programs, data & statistics, research, avocacy, volunteer and job openings.

The National Jewish Medical and Research Center

1400 Jackson Street, Denver, CO. 80206, 303-388-4461. 1-800-222-LUNG. National Jewish Call the National Jewish Medical and Research Center toll free line at 1-800-222-LUNG to talk with to a nurse or respiratory therapist, or to request information from a doctor.

National Lung Health Education Program: A program for early diagnosis of COPD

Easy to read/understand information about Your Lungs, Spirometry and Stop Smoking for patients. National Lung Health Education Program "The prevention of lung disease and the promotion of lung health is the goal of the National Lung Health Education Program" Goal is early identification of patients in the early stages of COPD who absolutely must stop smoking. The idea is to catch the disease in the early stages, even before symptoms are noticed by the patient. Spirometric abnormalities found by a simple test of exhaling can help to identify COPD and also help identify those at risk for lung cancer, heart attack, and stroke, for whom appropriate surveillance, behavior modification, and smoking cessation are critical. Article on New National Strategy by Tom Petty, MD More information: Twenty questions

American Association for Cardiovascular and Pulmonary Rehabilitation (AACVPR)

Rehabilitation programs help people with COPD to improve their health through exercise, better nutrition, appropriate use of medicine, and support. The AACVPR is an organization of rehab professionals and their listings can help you and your doctor locate a qualified rehab program. AACVPR A site for healthcare professionals. The online “Program Directory” lists over 1,100 rehabilitation programs, including certification of qualified programs. Also lists publications, links, and governmental affairs. 7611 Elmwood Avenue, Suite 201, Middleton WI 53562. 608-831-6989,

U.S. Federal Agencies

Surgeon General: The Virtual Office of the Surgeon General

Smoking Cessation Guidelines Office of the Surgeon General

Agency for Healthcare Research and Quality

Help for Smokers: Ideas to Help You Quit. Based on the U.S. Public Health Service Tobacco Cessation Guideline, released June 2000. Agency for Healthcare Research and Quality, Rockville, MD.

Office of Health Care Information, Executive Office Center, Suite 501, 2101 East Jefferson St., Rockville, MD 20852 1-800-358-929 —Smoking Cessation Consumer Tools Kit—This is a site for clinicians that explains a program for smoking cessation patients.

Centers for Disease Control and Prevention, Office on Smoking and Health

4770 Buford Highway, N.E, Mailstop K-50, (707) 488-5705 CDC'S TIPS—Tobacco Information and Prevention Source— A site for healthcare professionals and patients: news, research, data, statistics and reports of tobacco, smoking and health database, educational material, keeping kids tobacco, alcohol and drug free, tips on how to quit smoking, Surgeon General’s report and tobacco industry documents. Smoking cessation.

The American Lung Association Better Breathers Club: Check with your local hospital; the American Lung Association has state and local groups that can direct you, call the national office at 1-800-586- 4872 or try their web site for listings of affiliated local groups. 1740 Broadway, New York, NY 10019, 1-800-586- 4872.

Alpha1 National Association

Alpha1 National Association —Alpha1-antitrypsin deficiency is a cause of emphysema and COPD. “A non-profit, membershhip organization, dedicated to improving the lives of individuals and their families affected by alpha1-antitrypsin deficiency.“ A site for health care professionals and patients. A lot of info from all aspects about A1AD, Alpha1 Association, support and resources, legislation, medical and research, and various links. 8120 Penn Ave South Suite 549, Minneapolis, MN 55431-1326, 1-800-521-3025

COPD-Support, Inc.

This site has a number of programs intended to help meet the needs of individuals afflicted with COPD, caregivers who are responsible for an individual so afflicted, and medical personnel who have a particular interest in pulmonary medicine in general and COPD in particular. COPD-Support, Inc.COPD-Support, Inc. P. O. Box 490714 Ft. Lauderdale, FL 33349

EFFORTS

EFFORTS is a non-profit organization, formed, funded and operated by patients with the disease, working to promote research for emphysema and related lung diseases. It also provides a very vital support mailing list and educational resource for it's members without charge.

Bill Horden’s web site

Bill Horden’s web site—Written and presented by a highly motivated activist patient dedicated to informing and helping others. Bill provides interesting articles and worthwhile links and an email newsletter providing news and with emphasis on activism and advocacy. A site for patients with a lot of information and helpful links on the disease and how to cope with it (A COPD Survival Guide, a cookbook, and many links).

Respiratory News and Views

Respiratory News and Views, published by the Asthma/Emphysema Self-Help Group, P.O.Box 20321, Tompkins Sqare Sta. New York, NY 10009 John Leaman, Editor (212) 777-0486

Colorado Net

Helpful information, articles, news, links. Colorado Net

Ask Jo-Von COPD Patient-to-Patient

Jo-Von Tucker, co-author of Courage and Information, has been on supplemental oxygen 24 hours a day, 7 days a week for 12 years and has exceptional practical knowledge. She will answer questions pertaining to living and coping with COPD, establishing a partnership with your physician in managing your illness, and encouraging compliance with treatment programs.Ask Jo-Von

Newsletters and Organizations

The Breathing Space

An Internet newsletter sponsored by Boehringer Ingelheim Phamaceuticals, Inc. for people with COPD The Breathing Space. Useful information for “COPD patients, their friends and families, and healthcare professionals.” Lots of easy to read and understand COPD info written especially for COPD patients and their families including: The COPD Library which explains the disease, Living With COPD, Airways Online Newsletter. Subscription signup for BreatheWell, a magazine designed for those who need the latest information on allergy, asthma, chronic bronchitis, emphysema, pneumonia, smoking risks, flu, and many other topics. The magazine is published four times a year.

EFFORTS

EFFORTS is a non-profit organization, formed, funded and operated by patients with the disease, working to promote research for emphysema and related lung diseases. It also provides a very vital support mailing list and educational resource for it's members without charge

Healthy Resources™

HealthyResources.com provides access to discussions and support among people with COPD, news and information, and products. It includes the web page for Courage and Information and is a service provided by New Technology Publishing, Inc. —A site for patients to learn about COPD and sleep apnea and preview informative books on these subjects.

Bill Horden’s web site

Bill Horden’s web site —Written and presented by a highly motivated activist patient dedicated to informing and helping others. Bill provides interesting articles and worthwhile links and an email newsletter. A site for patients with a lot of information and helpful links on the disease and how to cope with it (A COPD Survival Guide, a cookbook, and many links).

National Emphysema Foundation

Sreedhar Nair-M.D., Chest Medicine, Norwalk Hospital, Norwalk, CT 06856 Education and research. National Emphysema Foundation—A site for patients with extensive information on pulmonary health and pulmonary disease. The National Emphysema Foundation (NEF) has worked to improve the quality of life of those who have emphysema, asthma,and related diseases through education, research and direct patient care.

Pulmonary Education and Research Foundation (PERF)

A Guiding Program for Enjoying the Breath of Life. Education, research, information. Second Wind Newsletter. PERF P.O. Box 1133 Lomita, California 90717-5133, 310-539-8390 Pulmonary Education and Research Foundation (PERF) and Second Wind NewsletterA site for healthcare professionals and patients with an online newsletter, and interesting guides for exercise tips and breathing techniques.

The Pulmonary Paper

is a well-researched and clearly-written newsletter for people with COPD or other lung disease. The paper, a not-for-profit corporation, also sells books and videos through the newsletter or online. Articles, links: The Pulmonary Paper The Pulmonary Paper, POB 877, Ormond Beach FL 32175, 904-673-5108, email: Celeste Belyea, Associate Editor

Ron Peterson's web site

Ron Peterson's web site Smoking Information; Exercise Information; Product Information; What's New.

U.S. Department of Health and Human Services

Healthfinder search search on “lung disease” for an annotated guide to resources. Searching on COPD not as helpful. A site for patients for many diseases, lists links for helpful web resourcers and organizations.

Alpha One Foundation (Alpha-1 antitrypsin)

Alpha One Foundation—Alpha1-antitrypsin deficiency is a cause of emphysema and COPD. “The vision of the organization is to advance the means to control and cure A1AD and to improve the quality of life for those with the disorder.” A site for healthcare professionals—research and registry, Team Alpha1, A1AD news There is interesting information for patients as well with answers to many questions about A1AD. 2937 S.W. 27th Avenue, Suite 302 Miami, Florida 33133 Toll Free: (888) 825-7421, 305-567-9888, Fax 305-567-1317

Alpha1 National Association

Alpha1 National Association —Alpha1-antitrypsin deficiency is a cause of emphysema and COPD. “A non-profit, membership organization, dedicated to improving the lives of individuals and their families affected by alpha1-antitrypsin deficiency.“ A site for health care professionals and patients. A lot of info from all aspects about A1AD, Alpha1 Association, support and resources, legislation, medical and research, and various links. 8120 Penn Ave South Suite 549, Minneapolis, MN 55431-1326, 1-800-521-3025

COPD TODAY: A Life Challenge A Life Challenge | Resources: 1-Diagnosis and Treatment | 2-Adjustment and Support | 3-Information | 4-Newsletters and Organizations | Editorial
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