Who We Are & What We Do

Alpha-1 Antitrypsin Deficiency Canada Inc. (Alpha-1 Canada) is a national not-for-profit organization committed to providing information and support to people affected by Alpha-1 Antitrypsin Deficiency; informing the medical community about Alpha-1 Antitrypsin Deficiency; and to generate broad awareness about this genetic liver, lung and skin disease.

We are a registered non-for-profit charitable organization governed by a volunteer board of directors and assisted by a medical advisory committee consisting of Canada’s top researchers and clinicians in the field of Alpha-1.

Our History

In 2001, a small group of people affected by Alpha-1 (patients, carriers, caregivers) decided that something needed to be done about Alpha-1 in Canada. A committee was formed and a questionnaire was sent to all Canadians whom the committee knew were affected by Alpha-1. The main concerns expressed were:

  • the lack of Canadian information on Alpha-1
  • patients and their families feeling isolated and left to their own resources
  • medical practitioners often unaware and ill-equipped to deal with Alpha-1 patients
  • the need for some sort of organizational structure in Canada for those affected by Alpha-1

In October 2001, over ninety people attended a conference in Toronto held for and organized by people affected by Alpha-1 lung and liver disease. For many attending, it was the first time that they had ever met anyone else with this rare disease. Out of that meeting came a determination to develop an organizational structure in Canada whose goals would be to:

  • provide information and support to patients and caregivers
  • liaise with and provide information to physicians and the wider medical community
  • develop relationships with other patient groups who could provide resources, information and support
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.
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