National Health Council — Voluntary Health Agency Guide

Alpha-1 Foundation

The Alpha-1 Foundation is a not-for-profit Florida corporation founded in 1995. The Foundation is dedicated to providing the leadership and resources that will result in increased research, improved health, worldwide detection, and a cure for Alpha-1. The majority of the board of directors either is diagnosed with Alpha-1 or is a family member of an individual diagnosed with Alpha-1.

The Foundation has realized continuous growth since its inception and has developed a solid infrastructure to promote research and the development of new therapies for improving the quality of life for those diagnosed with AAT Deficiency. It has fostered collaborations with investigators throughout the United States and in Europe, working closely with the National Institutes of Health, the Food and Drug Administration, individuals affected with AAT Deficiency and the pharmaceutical industry to expedite the development of improved therapies, including aerosol delivery for augmentation therapy.

The Alpha-1 Foundation participates in industry and government liaison groups and is involved in strategic alliances with government, industry and other national and international health and research organizations.

About the condition(s):

Alpha-1 Antitrypsin Deficiency (AAT Deficiency or Alpha-1) is one of the most common serious hereditary disorders in the world and can result in life-threatening liver disease in children and adults, or lung disease in adults.

Alpha-1 has been identified in virtually all populations. An estimated 100,000 Americans and a similar number in Europe have the severe deficiency. An estimated 25 million people in the U.S. carry a single deficient gene that causes Alpha-1 and may pass the gene on to their children.