Support if you're a carrier for Alpha-1
Learning that you are a carrier for Alpha-1 may confuse or upset you. It may help you to share your status with your family, learn as much as you can about the effects it can have on your health, and seek support groups or genetic counseling to answer your questions.
The following tools help people with Alpha-1 better understand and manage their condition. Check back frequently; new tools are added periodically.
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These are support organizations for patients with Alpha-1 in the United States. To see if there is a local chapter or events are in your area, contact the national organization, or ask your doctor.
Alpha-1 Foundation is the only national research organization solely dedicated to developing the means to cure and control Alpha-1 and to improve the quality of life for those with the disorder. The strategic program direction and all activities of the Foundation are guided by representatives of the Alpha-1 Foundation, medical and scientific communities. For more information, visit www.alphaone.org or call 877-2-CURE-A1 (877-228-7321).
AlphaNet is a not-for-profit health management company providing comprehensive services exclusively to the Alpha-1 community via care coordinators who are Alpha-1 patients themselves. AlphaNet provides personalized education and support to patients receiving PROLASTIN-C through Prolastin Direct Patient Services®. AlphaNet produces the Big Fat Reference Guide (Registration with AlphaNet required), a comprehensive guide to living with Alpha-1. To learn more, call 800-577-2638 or visit www.alphanet.org.
The American Lung Association can provide information and assistance, especially if you are trying to quit smoking. Their mission is to prevent and fight lung disease through education, community service, advocacy and research, seeking better treatments, and cures. For more information, visit www.lungusa.org or call 800-LUNG-USA (800-586-4872).