Greetings and Welcome from the President and Chairperson of Alpha-1 Canada
Welcome to Alpha-1 Canada’s redesigned and enhanced website. It’s packed with information and resources about alpha-1 antitrypsin (also known as alpha 1-antitrypsin deficiency, A1AD, α1ATD, AATD). We hope that our new site’s features will better serve your needs and meet your expectations. You have my assurances that the Alpha-1 Canada team has taken great care in gathering and publishing the most current and accurate information about our disease.
I invite you to navigate our website and take a look at the extensive information at the click of your mouse. We realize that some topics may need to be expanded upon, or some additional resources may need to be included. Your guidance is encouraged and we invite you to share with us your thoughts on these or other subjects related to Alpha-1.
I say this without hesitation, we look forward to your feedback and welcome your thoughts and suggestions. Having said this, please take the time to peruse the information here and learn not only about alpha-1 antitrypsin deficiency but also about the programs and services we offer, from our from support groups to one-on-one peer support and expert advice from experts and other patients, this is the only Canadian place to be. As an Alpha-1 patient, either newly diagnosed or someone who has been living with this rare disease for many years this is your go-to resource for news, information, and support.
If you are a physician, healthcare provider, or medical researcher, you will find the information you need as well, to provide timely testing, diagnosis, treatment and uncover the importance of referring your patients to us.
If you are a family member of a loved one with Alpha-1 or a supportive caregiver you are not forgotten. We have information and support specifically for you to help you and your patient through their care journey.
Alpha-1 Canada’s 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 are an inspired, patient and healthcare focused, national, charitable organization. Our Board of Directors and members of our well-regarded Medical Advisory Board represent all regions of this great country. They and our staff are dedicated and deeply committed to improving the quality of life for Alpha-1 patients and of course to finding a cure that will eliminate this disease and the hardships it causes.
The information, help and support you need is available here and through our programs and services designed to assist you in very practical ways to make informed choices about your medical care and have confidence in the clinical pathway you are following, so that you can meet the challenges of this illness on your terms. From support meetings focusing on living an enriching and fulfilling life to webcasts featuring some of the leading medical experts treating Alpha-1 patients, you will learn about the latest advances in the treatment of this disease, thereby enabling you to be an informed and active patient advocate in your disease management plan.
I share your concerns and fears regarding this debilitating illness, but also know that with knowledge you can continue to enjoy life’s pleasures. I say this with all sincerity, not in my role as a volunteer, but as an Alpha 1-patient myself and a sister to another.
Mimi McPhedran, President and Chairperson Alpha-1 Antitrypsin Deficiency Canada Inc
I think I need to pursue this. I appreciate the information. I will be taking it to my family doctor and requesting further testing.GB