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The
links that follow are to people and places and organizations and
publications that I've found useful in learning more about or living
with Alpha-1 Antitrypsin Deficiency. This first section is made up of companies (both for and not for profit) that are part of the alpha community. Inclusion in this list should not be inferred to be as some kind of endorsement on my part. I would not include any link that I thought was the least bit questionable so you can assume that I have left out any that I didn't think belonged on such a list. As with any information found on the Internet, great care should be taken when considering any changes to your own medical care. All such decisions involving your medical care should be reviewed with your trusted personal clinicians. This website ,nor any website, should be used in place of consultation with your physicians. |
| Organizations/Businesses/Universities/Clinics: | |
| Non Profits | |
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The Alpha-1 Association The Alpha-1 Association is wonderful non-profit organization run for and by Alphas and is focused on education, awareness, patient protection and advocacy. |
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The Alpha-1 Foundation The Alpha-1 Foundation is another great non-profit organization whose focus runs mainly toward the needs of doctors, clinicians, researchers and the like. A great place to find a good alpha doctor or center of excellence. |
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http://www.alphanet.org Alphas helping alphas and putting their profits into research looking for a cure |
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http://www.uneedpsi.org/ is the website for Patient Services Incorporated. PSI helps those needing help to cover their insurance co-pays or the premium payments some need to afford their life saving augmentation therapy. |
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Queen
Noreen's alpha-1 haven - Spiderspun @
http://www.spiderspun.net/ Weekly chat sessions every Saturday night |
| Clinics/Hospitals/University/Research affiliates | |
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While there are several hospitals and clinics that have wonderful Alpha-1 programs, these are the ones that are in my opinion - the best. If you are looking for information about alpha1 or opportunities to participate in research - these are great places to start. The Cleveland Clinic in Cleveland, Ohio, University of Texas at Tyler , University of Florida in Gainesville, National Jewish Hospital in Denver, Colorado, Medical University of South Carolina |
| Pharmaceutical manufacturing companies providing medicines designed specifically for our Alpha-1 community | |
| A quick note about alpha-1 IV augmentation
therapy: To date, there have been no double-blind studies performed showing with scientific certainty that augmentation therapy works. While this is a point of some great debate within some scientific circles the overall feeling within the alpha-1 community - at least in the USA is that it works effectively in many deficient individuals to slow or even stop the ongoing loss of lung function usually associated with A1AD related COPD. In some studies - not double blind ones - Prolastin® was shown to be effective in slowing the rate of decline in those suffering from Alpha-1 related lung disease. When Aralast® and Zemaira® were brought to the market place they proved to the FDA only that they had the same clinical efficacy as Prolastin®. Nothing else. In the marketing efforts that followed on all sides to either gain or maintain market share, great emphasis was placed on the newer products having a 'better' or 'cleaner' manufacturing process since the older process for Prolastin® was using technology approved by the FDA in the late 1980's when Prolastin® came to the marketplace. While this all has made for very interesting advertised claims the bottom line is that all products have been tested to the FDA's satisfaction to have performed just as Prolastin® - as produced using 1980's FDA approved technology. At this writing, it appears that all of the manufacturers are attempting to bring their manufacturing facilities to as state-of-the-art as possible in order to achieve that bit of an edge needed when marketing products which are proven to effectively do the same thing. I say all of this only to let the reader know that all 3 companies offer products that save lives within the alpha-1 community. I think I can safely say that we need and appreciate the fact that these companies have chosen to provide us with products which many of us feel have saved and will continue to save not just time living longer lives but time spent living quality lives and all through the use of medications that have been proven to the FDA's satisfaction - to do the same thing and that Prolastin is the old workhorse of the bunch. |
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Telecris - Formerly Bayer.
Manufacturer of Prolastin® Telecris and their product, Prolastin®, are the oldest, most experienced and best established of the IV augmentation therapy companies supporting through medicine the Alpha-1 Community. Telecris has recently wrapped up some testing of a new manufacturing process for what they are calling Prolastin® (Advanced Process). My impression is that they intend to market a product made with very similar processing steps used by Baxter and ZLB Behring... but that is just my impression. |
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Baxter Therapeutics - Manufacturer of Aralast® Baxter Therapeutics' product serving the Alpha-1 augmentation therapy needs is Aralast®. The FDA recently approved an 'improved' version of Aralast® dubbed Aralast NPR®. Per the press release from early May, 2007
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ZLB
Behring - Manufacturer of Zemaira® Zemaira® was introduced to the marketplace at about the same time that the Baxter product was introduced as well. Both Zemaira® and Aralast® were proven to have the same clinical efficacy as Bayers/Telecris' Prolastin®. |
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Kamada LTD, of Israel, is engaging in human testing for a new IV therapy product they are developing. (5/24/2007) The Kamada human alpha-1 augmentation therapy product has yet to be named but is currently undergoing human testing in the US. |
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| Documents, Publications,
Informational Websites - from both the lay and clinical communities. |
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The causes of COPD and who is at risk? This is from "Chest Online" |
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The dailylung.com guide to Alpha-1-Antitrypsin deficiency The Daily Lung is a good resource of understandable information. |
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The definition of COPD More from "Chest Online" |
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Pulmonary Pathology This site will connect you with pictures of lungs - both healthy and not so healthy. |
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Antitrypsin Deficiency A medically detailed analysis of the deficiency. |
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Worldwide Racial and Ethnic Distribution of {alpha}1-Antitrypsin Deficiency: Summary of an Analysis of Published Genetic Epidemiologic Surveys -- de Serres 122 (5): 1818 -- Chest |
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NORD - National Organization for Rare Disorders, Inc. |
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Yahoo! Health:Diseases and Conditions:Alpha-1 Antitrypsin Deficiency |
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Survival and FEV1 Decline in Individuals with Severe Deficiency of alpha 1-Antitrypsin -- The Alpha-1-Antitrypsin Deficiency Registry Study Group 158 (1): 49 -- American Journal of Respiratory and Critical Care Medicine |
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ALPHA-1 ANTITRYPSIN DEFICIENCY Pediatric Oncall |
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THE MERCK MANUAL, Sec. 4, Ch. 41, Chronic Liver Disease |
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ALPHA-1 ANTITRYPSIN DEFICIENCY Pediatric Oncall |
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EMedicine - Alpha1-Antitrypsin Deficiency : Article by Sarah Catherine Lyman Hellewell, MD |
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Alpha 1-antitrypsin deficiency - Wikipedia, the free encyclopedia |
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Alpha-1-Antitrypsin Deficiency a link to 'the doctors doctor' website. |
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Alpha-1 Antitrypsin Deficiency a link to DNA Direct website |
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Alpha1-Antitrypsin Deficiency Genetic Testing -- What is alpha1-antitrypsin deficiency? |
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BBC - Health - Conditions - Alpha-1-antitrypsin deficiency |
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Medicinenet.com |
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About dot com Lung Disease |
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Watch this space for more
links! |
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Are you still watching? |
Last updated: June 13, 2007
© John P. Morton all rights reserved