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Support for Carriers

Downloadable tools

The following tools help carriers of Alpha-1 better understand and manage their condition. Check back frequently; new tools are added periodically.

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What does it mean to be an Alpha-1 Carrier?

Online Resources

These are patient support organizations in the United States. To see if there is a local chapter or events in their area, patients can contact the national organization.

Alpha One 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. Representatives of the Alpha One Foundation and the medical and scientific communities guide the strategic program direction and all activities of the Foundation. For more information, patients can visit www.alphaone.org or call 877-2-CURE-A1 (877-228-7321).

Alpha-1 Association is a nonprofit organization that exists to help people with Alpha-1 and to act as a patient advocate. The National Association acts as a clearinghouse of information to assist healthcare professionals and individuals with Alpha-1. Through this organization, people with Alpha-1 can meet other people with Alpha-1 who can provide encouragement. Some people meet informally as part of a national support network. There are chapters all across the country, with new ones springing up all the time. For more information, patients can visit www.alpha1.org or call 800-521-3025.

AlphaNet is a not-for-profit health management company providing comprehensive services exclusively to the Alpha-1 community. AlphaNet provides enrollment assistance to patients receiving PROLASTIN-C through the Prolastin Direct Patient Services® Program, and helps coordinate their care. AlphaNet also helps coordinate information on insurance and nursing care, ordering infusion supplies, and additional education and support. In addition, AlphaNet provides free Alpha-1 test kits and information about testing, as well as the Big Fat Reference Guide, a comprehensive guide to living with Alpha-1. For more information, patients can visit www.alphanet.org or call 800-577-2638.

The American Lung Association can provide information and assistance, especially if patients 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, patients can visit www.lungusa.org or call 800-LUNG-USA (800-586-4872).

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Important Safety Information

PROLASTIN-C, Alpha1-Proteinase Inhibitor (Human) is indicated for chronic augmentation and maintenance therapy in adults with emphysema due to deficiency of alpha1-proteinase inhibitor (alpha1-antitrypsin deficiency). The effect of augmentation therapy with any alpha1-proteinase inhibitor (alpha1-PI) on pulmonary exacerbations and on the progression of emphysema in alpha1-antitrypsin deficiency has not been demonstrated in randomized, controlled clinical trials. PROLASTIN-C is not indicated as therapy for lung disease in patients in whom severe Alpha1-PI deficiency has not been established.

PROLASTIN-C may contain trace amounts of IgA. Patients with known antibodies to IgA, which can be present in patients with selective or severe IgA deficiency, have a greater risk of developing potentially severe hypersensitivity and anaphylactic reactions. PROLASTIN-C is contraindicated in patients with antibodies against IgA.

The most common drug related adverse reactions during clinical trials in ≥ 1% of subjects were chills, malaise, headache, rash, hot flush, and pruritus.

PROLASTIN-C is made from human plasma. Products made from human plasma may carry a risk of transmitting infectious agents, e.g., viruses, and, theoretically, the Creutzfeldt-Jakob disease (CJD) agent.

Please see accompanying PROLASTIN-C Full Prescribing Information for complete prescribing details.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.