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Alpha-1 Foundation

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Funds research to improve treatment and ultimately find a cure for those affected by Alpha-1, a genetic cause of potentially fatal lung and liver disease.

Program Overview

The Alpha-1 Foundation is the global leader in the fight against Alpha-1 Antitrypsin Deficiency. The Foundation has invested more than $54 million to support Alpha-1 Antitrypsin (AAT) research and programs in nearly 100 institutions in North America, Europe, the Middle East and Australia. The level of research activity in AAT is at an all-time high and holds much hope for the future for individuals diagnosed with AAT Deficiency._x000D_
GRANTS: The specific aims of the Alpha-1 Foundation’s peer reviewed grants program are to promote research that would eventually result in the improved health of individuals with AAT, with a focus on the lung and liver disease of AAT Deficiency. The program supports basic science and clinical research, improved understanding of the pathogenesis of the clinical manifestations of AAT, the development and testing of treatments for the disease, bioethics and social research, and the promotion of education of members of the medical community regarding AAT. The Alpha-1 Foundation offers grant awards in the following grant categories: Bridge, Ethical, Legal and Social Issues Relating to AAT Deficiency, Pilot and Feasibility, Postdoctoral Research Fellowship, Research, Scientific Meeting Sponsorship and Travel Grants. Payments of grants occur on a quarterly basis upon the commencement of the grant. _x000D_
The Foundation’s leadership is comprised of an active volunteer structure of more than 100 individuals that serve on its Board of Directors, Medical and Scientific Advisory Committees and Working Groups who together oversee the Foundation’s operations as well as its scientific and research activities. _x000D_
The Alpha-1 Research Infrastructure provides support for a network of more than 150 Alpha-1 investigators worldwide. It is one of the Foundation’s most valuable assets and includes an Alpha-1 Research Registry; DNA & Tissue Bank; Genetics Laboratory; three full-time academic and/or clinical research programs. The Foundation also organizes scientific meetings, conferences, workshops and symposia that are important components of this infrastructure. _x000D_
There over 70 Clinical Resource Centers throughout North America that specialize in patient care and education for those with Alpha-1 Antitrypsin Deficiency (Alpha-1). Some Centers treat lung disease and others liver disease. Centers have other resources for Alphas such as support groups, transplant centers and pulmonary rehabilitation._x000D_
The National Targeted Detection Program (NTDP) is dedicated to raising awareness of Alpha-1 and encouraging medical professionals to conduct targeted testing, while preserving the confidentiality and privacy of participants and their families. Awareness and educational outreach programs are targeted to reach the medical, scientific and Alpha-1 communities as well as the general public. _x000D_
The Foundation’s Public Policy Program monitors and influences legislative and regulatory issues and makes public the Foundation’s positions on such issues as research, new therapies, screening and detection, access to care, medical privacy, genetic non-discrimination, federal and state funding, blood product safety, education, and awareness._x000D_
The Foundation is committed to close collaborations with medical experts, the NIH, the FDA, industry, the Alpha-1 Community and other organizations to jointly resolve critical issues in the field of Alpha-1 research and treatment and to advance its public policy goals and other mission points. _x000D_
The Alpha-1 Foundation Support Group Network is a collective of more than 80 affiliated support groups including four Virtual Support Groups (Alpha-1 Families, Caregivers, Pre and Post Transplants & Timely Topics). These groups are dedicated to providing support, education and information to people affected by Alpha-1 and to extending the mission of the Alpha-1 Foundation. _x000D_