The Alpha-1 Foundation is committed to finding a cure for Alpha-1 Antitrypsin Deficiency (Alpha-1) and to improving the lives of people affected by Alpha-1 worldwide. The Foundation is a not-for-profit Florida corporation founded in 1995 by John Walsh, Sandy Lindsey and Susan Stanley, three individuals diagnosed with Alpha-1. A majority of the Board of Directors are either diagnosed with Alpha-1 or have a family member diagnosed with Alpha-1.

The Foundation has developed a solid infrastructure to promote research and development of new therapies for improving the quality of life for those diagnosed with Alpha-1. It has fostered collaborations with investigators throughout the United States and Europe, working closely with the National Institutes of Health, Food and Drug Administration, individuals affected by Alpha-1 and the pharmaceutical industry to expedite the development of improved therapies.

The Foundation participates in industry and government liaison groups and develops strategic alliances with government, industry and other national and international health and research organizations.

The Alpha-1 Foundation has invested more than $90 million to support Alpha-1 research and programs at 123 institutions in North America, Europe, the Middle East and Australia. The Foundation has established activities and programs including the Alpha-1 Research Registry, the Alpha-1 DNA & Tissue Bank, the Alpha-1 Research Network, International Scientific Conferences, and the Gordon L. Snider Critical Issues Workshop Series.

Follow the Alpha-1 Foundation on social media for up-to-date Alpha-1 news and information:
Facebook - Alpha1Foundation
Twitter - alphafriend
Instagram - Alpha1Foundation

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Alpha-1 Foundation

The Coral Gables office focuses on communications, fundraising, and clinical outreach to enhance community engagement and support.

Coral Gables

Scott Santarella

This department provides strategic direction and governance for the organization.

Executive Leadership

This department focuses on supporting and advocating for patients with rare diseases, providing guidance and resources to enhance their experiences and outcomes.

Patient Advocacy

This department manages the organization’s communication strategies and public relations efforts.

Communications Department

This department focuses on acquiring funding and facilitating global outreach for clinical research initiatives.

Funding and Outreach

This department manages the planning and execution of marketing strategies and communication initiatives to promote the organization and its events.

Marketing and Communications

This department focuses on the development and management of initiatives aimed at enhancing patient experiences and outcomes.

Alpha-1 Foundation

Org chart

Teams

Executive Leadership

Patient Advocacy

Communications Department

Funding and Outreach

Marketing and Communications

Patient Programs

Offices

Alpha-1 Foundation

Org chart

Teams

Executive Leadership

Patient Advocacy

Communications Department

Funding and Outreach

Marketing and Communications

Patient Programs

Offices

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