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COPD TODAY: Internet ResourcesHEALTHY RESOURCES HealthyResources Home | Books | COPD | Phantom Sleep Apnea | Blog: Chronic Conditions | Sleep Apnea Newsletter | Privacy Policy | New Technology Publishing |COPD COPD home | Courage and Information: book | BUY Courage and Information | COPD TODAY: magazine | LINKS | Editorial Board | |
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COPD TODAY is an Internet magazine providing in-depth information to enable people with COPD, their families, and their caregivers to improve their health and their lives through better management of COPD. Each issue includes bibliography, references, and Internet materials for additional learning. This document, "COPD TODAY: Internet Resources" lists and briefly annotates some of the key Internet resources we have found. We have classified the sites into several groups, and many sites fall into more than one category. Some sites are not yet classified. Please notify us of any new or revised sites to help us to enable our readers to have access to all related information. We welcome unframed links to our site and are pleased to help our readers find help elsewhere; we hope to keep the Internet as a collaborative space. This document will be maintained and updated on the Healthy Resources site at http://www.HealthyResources.com/copd/copd-today/linkmaster/. We welcome suggestions, additional links, and categories. We look forward to hearing from you—Jerry Halberstadt, Publisher
Agency for Healthcare Research and Quality Help for Smokers: Ideas to Help You Quit.— http://www.ahcpr.gov/consumer/helpsmok.htm Based on the U.S. Public Health Service Tobacco Cessation Guideline, released June 2000. Agency for Healthcare Research and Quality, Rockville, MD. {*}{T} {S}
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— http://www.aacvpr.org/ 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, {*}{T}
American Lung Association 1740 Broadway, New York, NY 10019, 1-800-586-4872. The American Lung Association —http://www.lungusa.org —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, advocacy, volunteer and job openings. Better Breathers Club: Check with your local hospital; the American Lung Association has state and local groups that can direct you, try their web site for listings of affiliated local groups. {*}{T} {O} {A}
Airwaves. Magazine edited and written by professional writers and medical authorities, and sponsored by a pharmaceutical company. Airwaves http://www.airwavesonline.com/ {*}
Canadian Lung Association Extensive information on COPD Canadian Lung Association http://www.lung.ca/copd/tofc.html "The motto "to improve respiratory health" serves as a constant positive reminder that The Lung Association's chief purpose is to combat both disease and environmental threats to the lungs. The Lung Association strives to change the reality of lung disease in Canada, and the toll it takes on thousands of Canadians every year. Our primary work involves research, education and the promotion of healthy living. One leading objective is to influence people not to start smoking, and to quit if they do smoke. Lung Associations promote smoke-free air in the workplace, and actively support legislation to regulate and/or prohibit smoking in public enclosed areas. Lung Associations across Canada work with public health officials, hospitals, universities, community groups and other volunteer health agencies to protect the air we breathe." {*} {A} {O}
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 —http://www.cdc.gov/tobacco/— 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. {*} {T}
Colorado Health Site. The Need: When patients are involved in decision making, the health of the patient improves substantially, their symptoms decrease, and laboratory tests of their health show improvement. Mission: Education of patients, their families and friends about the chronic condition they face.Colorado Health Site. — http://www.coloradohealthnet.org/ Information, book reviews, interaction. Essentially the same site but with some differences in content, under a Florida-based organization at Florida Health Site —http://www.floridahealthsite.org/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
COPD-ALERT A nonprofit, INTERNET-based SUPPORT and ADVOCACY group for COPD patients, caregivers, medical professionals, and all those who care. http://www.COPD-ALERT.com {A} {C}
COPD-Support, Inc. A web site and a number of mailing lists. Participants and intended audience includes people with COPD, families, friends. 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. "If we take charge then we can dramatically affect the progress of the disease, learn that we can still lead quality lives, and be proud." COPD-Support, Inc http://www.copd-support.com/ {C}
EFFORTS Emphysema Foundation for Our Right To Survive Information, advocacy, support. "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. EFFORTS http://www.emphysema.net/ . Vital support mailing list and educational resource for it's members. {O}
Global Initiative for Chronic Obstructive Lung Disease (GOLD) "is a collaborative project of the US National Heart, Lung, and Blood Institute (NHLBI) and the World Health Organization (WHO). Its goals are to increase awareness of COPD and decrease morbidity and mortality from this disease. GOLD aims to improve prevention and management of COPD through a concerted worldwide effort of people involved in all facets of health care and health care policy, and to encourage a renewed research interest in this extremely prevalent disease." The report is a high-level policy overview of the causes, prevalence, treatment, prevention strategies, and research outlook in COPD, and is the basis for education and advocacy to influence national leaders and policy worldwide. GOLD —http://www.goldcopd.com/ {*) {A}
Healthy Resources™ HealthyResources.com—http://www.HealthyResources.com/ —A site for people with COPD, their families, and physicians to learn about working together for self-management of COPD and sleep apnea and preview informative books on these subjects. It includes the web page for Courage and Information and COPD TODAY {*} {A} {C}
Living with COPD Information and essays by people with COPD. Living with COPD —http://papapoo.com/ "Diagnosis of COPD is not necessarily a death sentence! There are options for the COPD patient! The COPD patient can make the difference!" {C}
National Jewish Medical and Research Center National Jewish —http://www.nationaljewish.org/ 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. {*}{T}
National Home Oxygen Patients Association NHOPA http://www.homeoxygen.org/"Oxygen Users Working to Improve the Lives of People Who Require Supplementary Oxygen " Activities include: Education, activism, ombudsman, research.
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— http://nlhep.org "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— http://www.nlhep.org/NewNationalStrategy.htm More information: Twenty questions http://www.nlhep.org/20questns.htm {*}{S}
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 —http://www.ahcpr.gov/clinic/toolskit.htm—This is a site for clinicians that explains a program for smoking cessation patients. {*}{T} {S}
Pulmonary Paper Edited by Celeste Belyea, RN, this is the online copy of a well-established newsletter. News, informative articles, letters from people with COPD, listing of support groups, links, sales of books and other products. "...a way for people with chronic lung problems to support each other and keep up on the latest news in respiratory care treatments and products. It is our belief that when a person understands their disease process and explores all avenues of treatments available; they will have power over, and, be better able, to cope with the symptoms and changes the disease may bring to their lives." Pulmonary Paper.— http://www.pulmonarypaper.org/ {*} {T} {C}
Pulmonary Education Research Foundation PERF Second Wind Newsletter. "We are dedicated to providing help for those with chronic respiratory disease through education, research, and information." PERF Second Wind Newsletter— http://www.perf2ndwind.org/ {*} {A}
Surgeon General--The Virtual Office of the Surgeon General Smoking Cessation Guidelines —http://www.surgeongeneral.gov/tobacco/ Office of the Surgeon General {*}{T} {S}
U.S. Department of Health and Human Services Healthfinder search —http://www.healthfinder.gov 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. {*} {T}
Alpha1 National Association— Alpha1 National Association— http://www.alpha1.org—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 {*} {A} {O}
Alpha One Foundation—Alpha One Foundation—http://www.alphaone.org—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.” There is interesting information for patients with answers to many questions about A1AD. A site for healthcare professionals—research and registry, Team Alpha1, A1AD news 2937 S.W. 27th Avenue, Suite 302 Miami, Florida 33133 Toll Free: (888) 825-7421, 305-567-9888, Fax 305-567-1317 {*} {A}
Bill Horden’s web site Bill Horden’s web site— http://www.copdadvocate.com/ —Written and presented by a highly motivated activist patient dedicated to informing and helping others. 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). Bill provides interesting articles and worthwhile links and an email newsletter providing news and with emphasis on activism and advocacy. To subscribe to the newsletter, THE COPD ADVOCATE," go to http://www.COPDadvocate.com, and enter your information at the ListBot box. {O} {A}
Robin Lord, The courage to breathe: Chatham woman offers heartfelt advice to others diagnosed with chronic obstructive pulmonary disease— From The Cape Cod Times, Health & Medicine section.
Jo-Von Tucker, “Don’t Volunteer for Loneliness,” in Airwaves Forum 2—
Jo-Von Tucker, "The devastation of the diagnosis," a selection from Courage and Information by Rick Carter, Brooke Nicotra, and Jo-Von Tucker.
Olivija's Pages Olivija's Who Am I The many facets and interests of a person who has COPD but is not defined by COPD. Olivija's COPD Resources Selected links Olivija's COPD Resources More quotes and links.
Ron Peterson's web site Ron Peterson's web site Smoking Information; Exercise Information; Product Information; What's New.
There is much that a person with COPD can do to improve health and lifestyle. Start by making sure your doctor is qualified and that the appropriate tests have been run. Once you are sure of the diagnosis, you need to learn more about your options and get information and support. Don't ignore the diagnosis and don't hope for the best—if you are proactive you can stop the damage and have a better quality of life. Courage and Information details available treatments and promotes an effective partnership between the person with COPD and their physician. {T}
You can read selections from this book online:Courage and Information for Life with Chronic Obstructive Pulmonary Disease: The handbook for patients, families, and care givers managing COPD, emphysema, asthmatic bronchitis, chronic bronchitis. Written by Rick Carter PhD (exercise physiology), Brooke Nicotra MD (pulmonologist), and Jo-Von Tucker (person with COPD). "If I had COPD, I would want this book."—Henri Colt, MD, Book Review in September 2000 Advance for Managers of Respiratory Care.
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