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.
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