Tell the FDA what it's like to live with Alpha-1
The U.S. Food and Drug Administration (FDA) has asked Alphas and their supporters to post written comments about their experiences with Alpha-1 on its website.
The comments will be added to those that were presented in person and online to the FDA during its meeting with the Alpha-1 community on Sept. 29 in Silver Spring, MD.
The FDA said it is particularly interested in hearing more patients’ perspectives on what it is like to live with Alpha-1, as well as thoughts on the current treatments that are available for the condition.
Host a Virtual Walk!
Stroll around your living room, stride through your neighborhood, or step onto the treadmill. You’ll not only get some good exercise, but also raise awareness of Alpha-1.
The first annual “Virtual Walk for Alpha-1,” organized by the Alpha-1 Foundation, allows anyone who wants to make a difference in the Alpha-1 community to contribute in their own style, in their own time, and at their own pace.
Share the Alpha-1 Story
Learn why it's important to get involved an make a difference for the Alpha-1 community in this heartfelt short documentary profiling three families affected by the genetic condition, Alpha-1 Antitrypsin Deficiency.
What is Alpha-1?
Alpha-1 Antitrypsin Deficiency (Alpha-1) is an inherited condition that can cause severe lung disease in adults and liver disease at any age.
There are at least 100,000 people with Alpha-1 in the United States. But fewer than 10% have been diagnosed.
Alpha-1 is the most common known genetic risk factor for emphysema.
About 1 in every 2,500 Americans may have Alpha-1.
Alphas all over the United States are asking their governors and mayors to declare the month of November Alpha-1 Awareness Month. See sample letters, proclamations and media contact info here.
Our Awareness Gear page has Alpha-1 items that you can get for friends and family to help spread the word about Alpha-1.
Help fund the progress being made in the fight against Alpha-1 related lung and liver disease.
Where Does Your Money Go?
The Alpha-1 Foundation has invested more than $50 million to support Alpha-1 research and programs in 97 institutions in North America, Europe, the Middle East, and Australia.