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.MC