Who we Are & What we do
Alpha-1 Antitrypsin Deficiency Canada Inc. (Alpha-1 Canada) is a national not-for-profit organization committed to advocating on behalf of Canadians affected by Alpha-1 Antitrypsin Deficiency, providing education to patients and the healthcare community to increase awareness and testing for this genetic disease.
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 encouragement 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 and information
Programs and Services
Alpha-1 Canada offers a number of programs and services for patients, their families and caregivers and the medical community. We are always looking for new ways to help and are open to your suggestions. Currently our programs and services are:
- Toll Free Information Line 1-888-669-4583
- Patient Education Days
- Educational webcasts
- Facilitation of peer-to-peer program
- Bilingual print materials for patients, caregivers and family members
- Bilingual print materials for physicians and allied healthcare professionals
- Promotion of wellness and self-management in healthcare programs and services including smoking cessation, nutrition, exercise and other lifestyle changes
- Promotion of and information on testing, early detection and treatment of Alpha-1 Antitrypsin Deficiency
- Advocacy for equitable and affordable access for Alpha-1 Antitrypsin augmentation therapy
- Advocacy for federal government policies addressing orphan drugs, rare diseases, access to treatment, quality healthcare and genetic non-discrimination
- Provide a range of collaborative services to healthcare professionals including consultative participation in policy forums and referrals for patients to researchers for clinical trial recruitment
- Investigate, create and implement on-going methods for organizational growth, data collection and healthcare management
Board of directors





Medical advisory board





Staff
