Alpha-1 Foundation Inc

Alpha-1 Registry and ACT Study: The Research Registry is a confidential database of diagnosed Alphas and carriers willing and able to participate in research studies and clinical trials for new therapies. It is comprised of both patient-supported and clinical data. The Registry represents the largest cohort of Alphas in the world. The goal of the Alpha-1 Coded Testing (ACT) Study is to provide a way for those at risk, including family members of diagnosed Alphas, to learn their genotype. The study includes a research questionnaire, a finger-stick testing kit, and is free and confidential.

Alpha-1 National Conference: The 33rd annual Alpha-1 National Educational Conference was a hybrid conference held on June 7-9, 2024. As the largest annual gathering of the Alpha-1 community, the national Conference provides important opportunities for networking, education, and advocacy. The speakers included some of the leading clinicians and researchers in the Alpha-1 field to bring incredible subject matter expertise and education to the community. the program covered a wide range of medical education and supportive topics to inform, empower and motivate patients to take charge of their health. The last six years of presentations are available on the Foundation's website at www.alpha1.org.

Alpha-1 Education Days provide access to current medical information and resources to hundreds of Alphas, their families, and caregivers.

The Foundation's Public Policy program monitors relevant legislation and regulatory issues and publicizes the Foundation's positions on such issues.

Other Alpha-1 services include patient education (materials, website, etc), a Patient Support Network, and a targeted detection program.