About Us

The Alpha-1 Association is a patient-driven organization dedicated to identifying individuals affected by Alpha-1 and improving the quality of their lives through support, education, advocacy and to encourage participation in research. As a 501(c) (3) not-for-profit membership organization, the Association has been providing services to Alphas and their families since 1991. It is governed by a volunteer board of directors comprised of individuals and family members with Alpha-1 and clinicians with expertise in the treatment of Alpha-1.


Our overall goals are to:

  • Identify individuals affected by Alpha-1 and provide specialized support to the newly diagnosed

  • Provide support and education for individuals and family members personally affected by Alpha-1.

  • Provide information and resources to individuals affected with Alpha-1.

  • Represent the Alpha-1 Community in public policy issues at the federal and state level.

  • Engage and empower Alphas in a grassroots network to advocate for individuals with Alpha-1.

  • Support the goals of research dedicated to curing Alpha-1 through collaboration with the Alpha-1 Foundation and encouraging the participation of Alphas in research programs.


By offering national leadership and programs, the Association has united the Alpha-1 Community and improved the day-to-day lives of individuals living with Alpha-1 Antitrypsin Deficiency (Alpha-1). Our membership base strengthens Community ownership of our national mission and programs and helps unify the voices of all Alphas. To become a member of the Association, please click here.


For more information on the Alpha-1 Association, please call 1-800-521-3025 or e-mail: info@alpha1.org.


Alpha-1 Association Core Values

Governance and Financial Documents


Policy Documents