Newly diagnosed with Alpha-1 Antitrypsin Deficiency?
Learning about Alpha-1 Antitrypsin Deficiency can seem a bit overwhelming but it doesn’t have to be. You are not alone; there is a whole Canadian community of other people affected by Alpha-1 willing to help. Whether you have Alpha-1 Antitrypsin Deficiency yourself or a loved one or family member does, we’re here for you!
Our mission is to provide information, education and support to Canadians affected by Alpha-1 Antitrypsin Deficiency; inform and educate the medical community about Alpha-1 Antitrypsin Deficiency; and generate broad awareness about this genetic liver, lung and skin disease.
We call Alpha-1 Antitrypsin Deficiency; “Alpha-1” for short and those with the disorder are known as “Alphas.” We go by Alpha-1 Canada, which is also short for Alpha-1 Antitrypsin Deficiency Canada Inc. We are a not-for-profit charity run by a volunteer board of directors made up of patients, caregivers and professionals who care deeply about you and your family. Our Medical Advisory Board is made up of doctors who are world-renowned experts on Alpha-1. Our only reason for being is to serve the Canadian Alpha-1 community.
With proper treatment and some lifestyle changes, it is possible to live a productive, fulfilling, happy and long life with Alpha-1. It is often said that, “Alpha-1 may be a life sentence, but it is not a death sentence!” The Canadian Alpha-1 community is comprised of many warm and welcoming people and organizations that provide support, education and resources. Alpha-1 Canada is here to support and help you as you begin your care journey. We can provide information, comfort, support and education and can introduce you to the friendly and supportive Canadian Alpha-1 community of patients and their families.
This web site is packed with useful information and links to all kinds of resources that you will find helpful. Take some time to look over the section called “Resources for Patients and Caregivers” there you will find information on your diagnosed disorder, treatments available, webcasts (videos and recordings) of patient education events, information on support groups and the importance of testing for your family.
Alpha-1 Canada is also just a toll free phone call away. We can put you in touch with a support group in your area or even another Alpha who is a little further along in their care journey and willing to just talk.
Although there are not a large number of Canadian doctors who specialize in Alpha-1, there are some, and most of them are involved in some way with Alpha-1 Canada and will often answer questions Alphas send to us.
So What’s Next?
- Register with Alpha-1 Canada to receive the latest information on Alpha-1 as well as invitations to on-line, telephone and in-person meetings and education events in your area
- Call us toll free for answers to your questions and for referrals to resources in the Alpha-1 Community
- Get connected to another person who has had a similar experience to you through our Peer Support Program
- Join a Support Group
- Locate a physician with expertise in Alpha-1
- Join the Canadian Alpha-1 Research Registry and help to find a cure for Alpha-1