The Alpha-1 Association monitors and influences Federal legislation and regulations that affect individuals and families living with Alpha-1. We accomplish this by collaborating closely with the Alpha-1 Foundation and other national organizations and coalitions with similar public policy goals. We ensure that the interest of the Alpha-1 Community is heard in the legislative process by harnessing our collective power in an organized grass roots lobbying effort. Miriam O’Day, Sr. Director of Public Policy, represents both the Alpha-1 Association and Alpha-1 Foundation on Capitol Hill ensuring a coordinated effort on behalf of the Alpha-1 Community. A Joint Public Policy Working Group (PPWG) is organized for the purpose of developing and recommending joint public policy goals to the Board of Directors of the Alpha-1 Association and Alpha-1 Foundation. Each organization designates representatives to the PPWG as well as to its national membership organizations and coalitions. |
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There are many issues of concern to the Alpha-1 Community that can make an impact on the quality of life for Alphas and for future generations. Although specific issues may change, the Association’s public policy program focuses on:
- Access to quality health care, including keeping and expanding current insurance reimbursement
- Blood product safety and availability
- Funding for medical and scientific research
- Urgent Need for New Therapeutics
