Alpha-1 Canada
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
Alpha-1 Foundation
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
Alpha Net
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.
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.
Toll Free: 1-800-577-2638