The Alpha-1 Foundation (A1F) hosted the 2026 Alpha-1 Foundation National Conference was held in San Diego, California from June 5th through June 7th in San Diego, California. As the largest annual gathering of the Alpha-1 community, the event brought together over 520 in-person and over 500 virtual attendees from across the Alpha-1 community to learn, connect, and collaborate.
This year’s theme “The Future in Focus” highlighted the important new chapter for A1F as we continue working toward meaningful progress through innovation and collaboration with patients, families, caregivers, coalitions, government officials and industry partners. This next phase is critical in shaping the future of Alpha-1 research and care and will enhance the way Alpha-1 Antitrypsin Deficiency (Alpha-1) is detected, diagnosed, and treated. We have a clear understanding of what needs to be done to advance our shared mission, and we’re committed to moving forward together.
“The 2026 Alpha-1 Foundation National Conference in San Diego was a weekend filled with optimism, energy, and excitement. Bringing together patients, families, caregivers, researchers, clinicians, industry partners, and advocates from across the country created an incredible sense of connection and momentum. What makes the Alpha-1 community extraordinary is not simply the science, it is the people. With patients at the center of all that we do, the conversations, collaborations, and breakthroughs highlighted throughout the weekend reinforced our collective commitment to improving lives and advancing research towards a cure. Standing beside the Alpha-1 Foundation are two extraordinary partners, AlphaNet and AlphaDetect, committed to the same shared mission. We leave inspired by how far we’ve come and even more encouraged by the hope on the horizon for every patient and family affected by Alpha-1,” said Scott Santarella, A1F President & CEO.
This year’s agenda featured a dynamic lineup of educational sessions, expert-led discussions, and opportunities to connect with others who understand the Alpha-1 journey. From general sessions and research presentations to specialized breakout tracks and evening events, there was something for everyone.
The conference kicked-off on Friday morning with a special video and welcome from Scot Santarella, A1F President & CEO, who emphasized the hopeful optimism encompassing the entire Alpha-1 community at this moment of history. With the theme “The Future in Focus” recognized the role each of us play in shaping the future. It challenges us to envision what is possible when scientific discovery, clinical innovation, patient advocacy and community engagement come together for a common goal: To find a cure for Alpha-. Advances in research will continue to deepen our understanding of Alpha-1 as new technologies, therapies and programs are transforming the Alpha-1 space in real time.
The first full day featured engaged sessions, including the popular Alpha-1 Empowerment Hour, led by Fred C. Walsh Speaker Bureau Members including Lisa Sideris, Dan Grimm, Joe Masnack, Catriona Garry, Robin Diamant, Betsy Scher, Mary Ryan, Patty Tew, Chelsea Boring, Lianne McLean and Carol Segal. This panel shared their Alpha-1 journeys and demonstrated how individuals can create meaningful impact and change through awareness, education, and action. This session included patient stories, advocacy, caregiving, family testing, transplant success, and living well with Alpha-1. The overall tone was not only scientific but also community-focused, emphasizing support, education, and patient leadership.
Day 1 Highlighted sessions included:
- Alpha-1 Research Registry & The A1F Therapeutic Development Network (TDN)
- Alpha-1 Antitrypsin Deficiency 101: Lung and Alpha-1 Antitrypsin Deficiency 101: Liver
- Advances in Genetic Testing & Understanding the Genetic Risk for Alpha-1
Day Two spotlighted research, detection, and the future of Alpha-1 treatment. Scott Santarella joined by Dr. James Stoller, A1F Board Member & AlphaDetect Board Chair and Julie Murray, AlphaDetect CEO reintroduced AlphaDetect and its efforts to improve awareness, testing and early diagnosis for Alpha-1. This centralized approach to detection together with the infrastructure and expertise of AlphaDetect, will help enhance and expand healthcare provider education and outreach to further reinforce the importance of screening.
Dr. Bradley Drummond moderated the Alpha-1 Research Panel highlighting the A1F research agenda, newly foundered grants, and key updates in Alpha-1 research, including findings from the A1BC, AATD—Liver Scan Study, and MZ Studies, as well as the latest adult and pediatric liver research. Panelists included Dr. Igor Barjaktarevic from UCLA
A1F Scientific Director, Dr. Andrew Wilson presented on Research & Clinical Trials 101 with a patient-oriented basic explanation of the different points for intervention and Alpha-1 treatment strategies including gene therapy, DNA editing, RNA editing, siRNA, and protein targeted therapies to provide attendees with a base understanding before the Emerging Therapies in Alpha-1 presentations.
Jon Hagstrom, A1F Board of Directors Chair introduced the highly anticipated “Emerging Therapies in Alpha-1” session with excitement around A1F’s continued investment towards a cure and collaborative partnerships to advance the development of novel therapies. Dr. Wilson moderated this session and introduced presenters from each of the companies. Thank you to Emerging Therapies in Alpha-1 Presenters: AIRNA (Dr. Jacob Elkins), Beam Therapeutics (Dr. Nic Currier), Prime Medicine (Dr. Mohammed Asmal), Sanofi (Nathan Thibault), Takeda (Dr. Tami Nussbaum), Tessera Therapeutics (Dr. David Davidson), and Wave Life Sciences (Kelly Damm).
Day 2 Breakout Sessions included:
- The Benefits of Pulmonary Rehab, Practical Breathing Tools & PFT Insights
- What’s New in Alpha-1 Research?
- Alpha-1 Pediatric Research—What’s New & What’s on the Horizon?
- Advanced Lung Disease & Preparing for a Lung Transplant
- Understanding the Importance of Clinical Trials for Alpha-1
- Ask the Expert Alpha-1 Pediatric Liver Q&A
- Alpha-1 Liver Transplant: Basics, Latest Techniques & What You Need to Know
- The Big Fat Reference Guide (BFRG) by AlphaNet
- Alpha-1 Pediatric Liver 101
- Breathing Life into Policy- Why You Should Engage in Advocacy
- Current & New Therapies in Alpha-1 Lung, Asthma, Bronchiectasis & Emphysema
- Fatty Liver Disease in Children
The AATD—Liver Scan Study was available during the conference as part of ongoing efforts to advance education, early detection, and patient engagement in research. The Alpha-1 Foundation (A1F) has taken the initiative to introduce an AATD-Liver Scan Study offering free FibroScan® screening at A1F events to Alpha-1 patients who are enrolled in the Alpha-1 Research Registry. A FibroScan® is a simple, painless screening test that uses ultrasound technology to measure how stiff your liver is. A1F provided participants with FibroScan® results at the end of the conference.
Special thanks to all conference presenters for giving their valuable time to this conference and throughout the entire year to make the A1F educational programming top notch. Thank you to our sponsors for the commitment and dedication to the Alpha-1 community: Platinum Sponsors: AlphaNet, CSL, Grifols, Sanofi, and Takeda; Gold Sponsors: Evernorth Health Services—Accredo Specialty Pharmacy, Advanced Infusion Care, AvenoRx, and CSI Pharmacy; Emerging Therapies in Alpha-1 Sponsors: AIRNA, Beam Therapeutics, Prime Medicine, Sanofi, Takeda, Tessera Therapeutics, and Wave Life Sciences.
