Alpha-1 Research, News & Events
copy hese Web sites and resources dedicated to Alpha-1 research and clinical trials, news and events in the Alpha-1 community, and organizations serving the A
Stay up-to-date through these Web sites and resources dedicated to Alpha-1 research and clinical trials, news and events in the Alpha-1 community, and organizations serving the Alpha-1 community.
Alpha-1 research and trials
- Alpha-1 disease management program improves patient health. A clinical study showed that a program designed to provide patient education enforced by regular telephone contacts, improves knowledge of Alpha-1, its treatment and patient health outcomes. The study found patients on therapy who were provided support compared to having no support had: more optimal long-term and short-term respiratory medication use, lower exacerbation rate (i.e., fewer breathing flare ups), fewer unscheduled physician/ER visits, and better overall patient satisfaction.1
- Participate in Alpha-1 studies. Clinical trials are research studies performed on human subjects, and may include studies to evaluate the course of a disease, the cause of a disease, or the treatment of a disease. In the United States, the FDA decides whether the studies performed demonstrate sufficient beneficial effect on the disease and are sufficiently safe to warrant broad distribution of the drug to patients. There are also clinical trials going on in Alpha-1 that do not involve the testing of new drugs or therapies, many supported by the Alpha-1 Foundation. Find out more about participating in an Alpha-1 study.
Alpha-1 news and events
- News about Alpha-1. Get the latest news and information through the Alpha-1 News and Community Currents newsletters, press releases and announcements, in addition to newsletters from support groups and the International Alpha-1 community. You can even submit newsworthy items or announcements. Learn more about Alpha-1 news.
- Alpha-1 educational resources. Thousands of people with Alpha-1 and their families take advantage of resources like Alpha-1 Education Days, a regional program providing access to education for those who cannot travel long distances; the Annual National Education Conference, a weekend of education about health, nutrition, emotional support, and public policy provided by national experts and leaders in Alpha-1; materials published by the Alpha-1 Foundation on a variety of topics; the Alpha-1 News, a quarterly publication, bringing news and information to more than 10,000 members of the Alpha-1 Community. Find out how to access Alpha-1 educational resources.
Other Alpha-1 resources
- 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 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. Representatives of the Alpha-1 Foundation, medical, and scientific communities guide the strategic program direction and all activities of the Foundation. To learn more, call 877-2-CURE-A1 (877-228-7321) or visit www.alphaone.org.
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One-stop PROLASTIN-C enrollment, delivery and support.
Prolastin Direct® Patient Services secures insurance authorization, coordinates infusion services, ships PROLASTIN-C directly to the location of your choice, and connects you to health management coordinators who are experienced Alpha-1 patients themselves. Find out more about Prolastin Direct® Patient Services now.