Why You Should Enroll With Us?
Alpha-1 Canada’s main reason for being is to inform, educate, support and represent the Canadian Alpha-1 Community.
Alpha-1 Antitrypsin Deficiency (Alpha-1) was only identified as a disorder 50 years ago and although there has been research done there are still many things that no one knows about this disorder.
As individuals affected by Alpha-1 and as a community we have a responsibility to contribute to learning more about this rare disease.
For example, while the medical geneticists tell us that there “should” be about 5,000 to 7.000 people with Alpha-1 in Canada, no one really knows for sure. And while research suggests that only people with certain genotypes should become ill, we know that some of those who “should” not do indeed get ill.
When Alpha-1 Canada sits down with government officials in various provinces to advocate for policy changes to benefit Alphas, the first question they ask is, “How many people in this province does this disorder affect?” We can tell them how many we know of, but we know there are more.
If any information is shared it is done so in aggregate, which means we may say that we know of 75 Alphas in say Saskatchewan, but we would never say who those people are or where exactly they live.
We are committed to maintaining accurate, complete and up-to-date personal information. If you are aware of changes to the personal information given to us, you may simply inform us of the changes and we will update our records accordingly.
Any individual may check and correct their personal information by contacting us through the Executive Director.
Please help us in raising awareness of Alpha-1 Antitrypsin Deficiency by ensuring we know how to contact you when new discoveries are made and also ensuring that we are well informed about you and other Alphas in Canada.
Click here to Enroll With Us.