Alpha-1 Foundation

Help advance Alpha-1 research, diagnosis, and treatment by joining the Alpha-1 Research Registry! Your participation makes a difference in the future of Alpha-1 care and discovery. Learn more and enroll today: alpha1.org/join-the-alpha…

Don’t miss the upcoming NY/NJ A1F Education Day on Saturday, April 11th, featuring a session on Hepatology with Dr. Fox. This session will explore important aspects of Alpha-1 liver disease and provide valuable insights for patients, families, and caregivers. Attend in person or virtually to learn more and connect with the Alpha-1 community. Register here: alpha1.org/event/2026-ny-…

We’re excited to officially announce the theme for the 2026 Alpha-1 Foundation National Conference! ⛵️ This year’s theme, The Future in Focus, highlights the progress, innovation, and collaboration shaping the next chapter of Alpha-1 research, care, and community. From scientific advancements to patient advocacy and education, the conference will explore what lies ahead and how we can move forward together. Learn more and register today: alpha1.org/national-confe…

Happy St. Patrick’s Day! Since 2008, the Alpha-1 Foundation has celebrated this special day with the community through the annual Celtic Connection. On Saturday, March 7, more than 300 guests gathered in Boston for Celtic Connection 2026, an evening honoring Irish heritage while raising funds for Alpha-1 research and related programs. Thanks to the generosity of attendees and donors, the event raised an incredible $200,000. Read more: alpha1.org/the-celtic-con…

The Alpha-1 Educational Scholarships Program recognizes outstanding students in the community who are pursuing higher education and building bright futures. Each year, these scholarships support individuals with Alpha-1 and their immediate family members as they continue their educational journeys. Read about last year’s recipients and learn how you can apply for this year’s scholarships: alpha1.org/2025-alpha-1-e…

This Pulmonary Rehabilitation Week, we recognize the important role pulmonary rehabilitation plays for individuals living with Alpha-1 lung disease. Pulmonary rehab programs help patients build strength, improve breathing, increase endurance, and enhance overall quality of life. For many in the Alpha-1 community, these programs provide not only valuable physical support but also education and encouragement along the journey of managing lung health. 🫁

Mark your calendar for the NY/NJ A1F Education Day on April 11th, where Dr. Goldklang will present “Alpha-1 Lung 101.” This session will cover important information about Alpha-1 lung disease and offer practical insights for those living with or caring for someone with Alpha-1. Participate in person or virtually by registering here: alpha1.org/event/2026-ny-…

We are now accepting applications for the 2026 Alpha-1 Educational Scholarships! These scholarships support Alphas and their immediate family members pursuing post-high school education, including students beginning their studies and adults returning to school or changing careers. Applications must be submitted with all required materials by April 15, 2026. Learn more about the scholarship program and how to apply at: alpha1.org/alpha-1-educat…. 🎓

The 2026 Shillelagh Award was presented to Dr. Mike Wells at this year’s Celtic Connection! This annual honor recognizes leaders in the Alpha-1 community whose dedication advances the understanding of Alpha-1 and improves the lives of those affected. The Shillelagh symbolizes the commitment of the physicians, researchers, and leaders who work every day to advance Alpha-1 research and care.

Explore new research shaping the future of Alpha-1 care. A1F’s February 2026 PubMed roundup highlights recently published studies by A1F-funded investigators, covering important topics in lung and liver disease and emerging treatment approaches. Read more: alpha1.org/february-2026-…

In a recent article published in the Cleveland Clinic Journal of Medicine, leading expert Dr. James K. Stoller highlights the ongoing challenge that Alpha-1 Antitrypsin Deficiency (Alpha-1) remains underrecognized. The publication outlines key gaps in detection and emphasizes strategies to improve awareness and diagnosis of this often overlooked genetic condition. Increasing recognition and testing is critical, as many individuals with Alpha-1 remain undiagnosed for years. Read more about why improving detection matters: alpha1.org/alpha-1-antitr…

Join us on April 11th for the New York / New Jersey A1F Education Day to hear from leading experts on Alpha-1 lung and liver disease, gain valuable insights, and connect with others in the Alpha-1 community. Register today to attend in person or as a virtual participant: alpha1.org/event/2026-ny-…

A1F President & CEO Scott Santarella is attending the CNBC Cures Summit today in New York City, which brings together the most influential investors, policy makers, and leaders in biotechnology to accelerate the future of medicine through breakthroughs in rare disease research. A1F is proud to be part of this exciting event, which highlights early and accurate diagnosis and A1-driven predictive models to expedite progress. According to Scott, “the sentiment at the forum was optimistic and hopeful in advancing potential cures for rare diseases. The primary theme is we are on the edge of extraordinary breakthroughs and innovations and we need to do all we can to take advantage of these opportunities.”

Rare Disease Day 2026 was a powerful reminder of what we can accomplish together. From raising awareness to amplifying the voices of those affected by Alpha-1, our community showed up in meaningful ways. Read our recap to see how we honored the day and continued moving our mission forward: alpha1.org/rare-disease-d…

Alpha-1 related liver disease is often missed. A new expert consensus is working to redefine how rare liver conditions are identified and diagnosed. Learn why this shift matters and how it could improve recognition of underdiagnosed patients: alpha1.org/substantially-…

Rare Disease Day is about amplifying the voices that shape change. A1F Board Chair Jon Hagstrom shares with @CPathInstitute how his Alpha-1 journey is informing research and redefining endpoints in rare disease clinical trials. Learn how patient advocacy is transforming the future of care by reading the full story here: ow.ly/qAw050Ynzt1

Today, we stand with every individual and family impacted by Alpha-1 and other rare diseases. #RareDiseaseDay is a time to elevate awareness, encourage testing, and underscore the importance of early diagnosis, access to quality care, and ongoing research. Rare does not mean alone. Together, we lift up rare voices and work toward better treatments and brighter futures for all. 💜

Dr. Marc Miravitlles, from Vall d’Hebron in Barcelona, Spain, and his research team visited the Alpha-1 Foundation (A1F) offices in Coral Gables, FL, to present updates on the European Alpha-1 Research Collaboration (EARCO) and their research projects. Dr. Miravitlles is the European Respiratory Society (ERS) President-Elect and a leader in clinical research in Europe on Chronic Obstructive Pulmonary Disease (COPD) and Alpha-1 Antitrypsin Deficiency (Alpha-1), with the objective of finding a cure and improving the lives of patients suffering from these chronic respiratory diseases.

Tiffany’s experience shows how one decision to get tested can ripple through an entire family. With #RareDiseaseDay coming up on February 28, we share her story to remind others that knowledge is power and early detection can make all the difference. To learn more about testing for Alpha-1, visit: alpha1.org/testing-diagno…