Alpha-1 antitrypsin deficiency was first identified in 1963. That may sound like a long time ago, but in the medical world it is not long at all. Most rare diseases have difficulty attracting the interest of medical researchers for a whole host of reasons; fortunately that is not the case for alpha-1 antitrypsin deficiency. Research is happening in Canada, the US and around the world and we learn more about this disease almost every day.
The Community of people affected by alpha-1 antitrypsin deficiency began to organize itself, in earnest, in 1999 and Alpha-1 Canada became a legal entity in 2004.
As a result of both of these facts, the definitive story on Alpha-1 antitrypsin deficiency in Canada is still being written. There is not a book called “Everything you wanted to know about Alpha-1 but were afraid to ask” yet!
In order to keep you as well informed as possible about the latest information and research about alpha-1 antitrypsin deficiency we use a number of methods.
The “News” section of our web site includes a blog where we broadcast information on Alpha news. We will be implementing soon a Q&A section where you can interact with us anytime and get answers to your questions…assuming answers exist. We also publish regular newsletters, webcasts of live educational events and are building a library of publications like submissions to governments, fact sheets and other publications for your reading pleasure!
Please make it a point to check these resources regularly and we welcome your input and suggestions for other ways to keep you informed. Also, registering yourself with us as a patient, caregiver or healthcare professional – to receive emailed copies of our newsletters – is a good thing!
Being well-informed about your disorder should be an important part of your treatment plan.
The newsletter is very informative and very well presented with the clever computer links and tie-ins.
DISCLAIMER:This website is designed to support, not replace, the relationship that exists between you and your physician. It is not the intention of this website to provide specific medical advice but rather to provide the Canadian Alpha-1 Community with information to better understand their health and their diagnosed disorder. Specific medical advice will not be provided and Alpha-1 Canada urges you to consult with a qualified physician for diagnosis and for answers to your personal questions.