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:

• 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 disorder. 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 groups who could provide resources, information and support