For more information and support for individuals diagnosed with Alpha-1 Antitrypsin Deficiency, please see the following resources.
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 generating broad awareness about this genetic liver, lung and skin disease. Alpha-1 Canada is governed by a volunteer board of directors and assisted by a medical advisory board made up of Canada’s top researchers and clinicians in the field of Alpha-1.
Alpha-1 Canada Support Hotline: 1-888-669-4583
The Alpha-1 Foundation is committed to finding a cure for Alpha-1 Antitrypsin Deficiency and to improving the lives of people affected by Alpha-1 worldwide. The Alpha-1 Foundation is a not-for-profit Florida corporation founded in 1995 by John Walsh, Sandy Lindsey and Susan Stanley, three individuals diagnosed with Alpha-1 Antitrypsin Deficiency (Alpha-1). A majority of the Board of Directors is either diagnosed with Alpha-1 or has a family member diagnosed with Alpha-1. The Foundation has developed a solid infrastructure to promote research and the development of new therapies for improving the quality of life for those diagnosed with Alpha-1. It has fostered collaborations with investigators throughout the United States and Europe, working closely with the National Institutes of Health (NIH), the Food and Drug Administration (FDA), individuals affected by Alpha-1, and the pharmaceutical industry to expedite the development of improved therapies.
Toll Free: 1-877-228-7321
Genetic Counselling Program
The American Alpha-1 Foundation’s Genetic Counselling Center provides free genetic counselling for patients, families, caregivers and healthcare professionals, including Canadians. Individuals who are diagnosed with Alpha-1 need education and information, but they may also need support in dealing with their feelings or with the other social impacts of a genetic diagnosis. Your doctor and nurse can provide information about your medical condition, but the Counselling Center is there to help you deal with the social issues related to Alpha-1. Specifically, the program:
- Provides information about inheritance, testing, management, prevention, resources and research
- Helps people understand and adapt to the medical, psychological and family implications of genetic contributions to disease
- Provides supportive counselling and referral to community or state support services
- Promotes informed choices and reviews available testing options with the family
Toll Free: 1-800-785-3177
AlphaNet has a mission. The heart of the mission is simple - to improve the lives of individuals affected by Alpha-1 Antitrypsin Deficiency. As a not-for-profit organization that is governed by, employs and serves Alphas, AlphaNet is uniquely able to develop and offer programs and services based on a very personal understanding of how Alpha-1 affects the lives of Alphas. In keeping with this mission, AlphaNet provides a wide range of specialized programs and services designed to meet the specific needs of the Alphas it serves.
Toll Free: 1-800-577-2638
Alpha Net Canada has been established as a charitable organization to provide services in Canada similar to those provided by Alpha Net in the U.S. There is currently no separate website for Alpha Net Canada.