Our History
Updated: June 26, 2009
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 sent to all Canadians whom the committee knew were affected by Alpha-1. Over 300 survey questionnaires were mailed out and 125 completed forms returned. The main concerns expressed were:
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the lack of Canadian information on Alpha-1
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patients and their families feeling isolated and left to their own resources
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medical practitioners often unaware and ill-equipped to deal with Alpha-1 patients
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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 disorder. Out of that meeting came a determination to develop an organizational structure in Canada whose goals would be to:
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provide information and support to patients and caregivers
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liaise with and provide information to physicians and the wider medical community
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develop relationships with other groups who could provide resources, information and support