Alpha-1 Resources

Resources on the Internet

The following websites contain helpful resources to support Alphas and their families:

• The Alpha-1 Association provides information and resources to individuals affected with Alpha-1, facilitates a grassroots network advocate for individuals with Alpha-1, and supports the goals of research dedicated to curing Alpha-1 through collaboration with the Alpha-1 Foundation and encouraging the participation of Alphas in research programs.
• The Alpha-1 Foundation provides leadership and resources to increase research, improve health, achieve worldwide detection, and find a cure for Alpha-1. This site contains an excellent explanation of Alpha-1, provides health tips, and offers a free Alpha-1 testing kit.
• The Alpha-1 Advocacy Alliance was formed to improve the health and well being of Alpha-1 patients, educate healthcare professionals about Alpha-1, and advance public policy for the Alpha-1 community. This site connects patients to online discussion groups, medicine-related resources, and other informational networks that advocate for individuals affected by Alpha-1.
• The COPD Foundation was established to accelerate the development of more effective and affordable treatments for COPD, expand services for COPD patients, and improve patients' lives through research and education. This site provides programs, information lines, and research-related resources for patients as well as treatment guidelines for medical professionals.
• The Pulmonary Education and Research Foundation seeks to provide help for patients with chronic respiratory disease through education and research, focusing on practical projects that benefit patients with pulmonary disease. The site contains a number of links to scientific articles, educational newsletters, and recent developments in research.
• The Genetics Home Reference is the National Library of Medicine's website for consumer information about genetic conditions and the genes or chromosomes related to those conditions. The Alpha-1 section of the site addresses basic questions about Alpha-1 and refers users to resources related to genetics, diagnosis, testing, and treatment.
• The American Lung Association is a leading organization that seeks to improve lung health and prevent lung disease through education, advocacy, and research. This site contains basic information about lung function and lung disease as well as more specific information about diseases such as COPD.
• The National Heart, Lung, and Blood Institute is a global organization that provides leadership for research, training, and education programs to promote the prevention and treatment of heart, lung, and blood diseases. This site includes specific information about Alpha-1 including: causes, risks, symptoms, diagnosis, treatments, and steps you can take to prevent or delay lung diseases related to Alpha-1.