The definition of empowerment in the Alpha-1 Antitrypsin Deficiency (Alpha-1) community was studied by gathering input from diagnosed individuals and their healthcare providers. This work led to an understanding of empowerment that includes personal forms (such as disease self-management, networking with other Alphas, and participation in research) and community-wide forms (advocacy, organizational development, and policymaking). This workshop will expand on these findings through discussion with Alpha-1 and LAM patients about their experiences and community involvement.

Presenters:

Symma Finn - University of Florida
John Walsh - Alpha-1 Foundation
Cathy Cantilena - LAM