Issuu

2026 PROGRAMS

REPORT

Transforming the Alpha-1 Journey. Advancing the Future.

A FUTURE WHERE EVERY ALPHA IS FOUND, INFORMED, SUPPORTED AND TREATED For more than three decades, the Alpha-1 Foundation (A1F) has worked to improve the lives of people affected by Alpha-1 Antitrypsin Deficiency (Alpha-1) and accelerate progress toward better diagnosis, care, treatments and ultimately a cure. Today, the Alpha-1 landscape is changing. More people are being identified. More providers are becoming informed. Research is opening new possibilities. Emerging therapies are moving closer to patients. And A1F has built and is expanding the infrastructure needed to ensure that the Alpha-1 community is prepared for what comes next.

We are not simply responding to the future of Alpha-1. We are helping build it.

A1F finds more Alphas.

A1F connects them to informed care.

A1F prepares for new treatments.

A1F supports them throughout their journey.

A1F amplifies the Alpha-1 voice.

A1F accelerates science.

A1F brings the resources together to make all of it possible.

This is the Alpha-1 Foundation’s role. Together, A1F and Alpha-1 patients are the future of Alpha-1. 2

Alpha-1 Foundation 2026 Programs Report

TABLE OF CONTENTS A Message from the President & CEO

Building the Alpha-1 Ecosystem

5-11

A Future Where Every Alpha Is Found, Informed, Supported and Treated

Betsy Scher’s Patient Story

6-7 8 9 10-11 12 13 14-15

Knowledge That Moves With the Patient

16-17

Connecting With Patients Earlier

18-19 20-21 22-23 24 25-26 27

Alpha-1 is a Global Community From A to Z, We Are Building the Alpha-1 Ecosystem Progress You Can See

The Patient Journey From Diagnosis to Lifelong Support

Bringing Patients Together A1F Education Days Alphas Supporting Alphas Meeting Patients Where They Are Building the Alpha-1 Patient Roadmap

The Healthcare Provider Journey From Awareness to Alpha-1 Informed Care Mike Wells, MD’s Healthcare Provider Journey Connecting Providers. Raising the Standard of Care. From Access to Activation

Alpha-1 Detection Helping Alphas Find Their Answer Building a Sustainable Detection Infrastructure Elevating Alpha-1 Awareness and Embedding Detection Strategies

Research & the Evolving Treatment Landscape Building the Infrastructure for the Next Generation of Treatments Turning Participation Into Possibility

28 29 30-31 32-34 35 36 37 38 39-41 42 43 44-46

Preparing Before Treatments Arrive

47-48 49-50

Fundraising

Fueling Every Step Forward

52 53-55

Preparing for a New Era of Treatment

Building the Next Generation of Philanthropy

Awareness & Public Policy Making Alpha-1 Impossible to Ignore More Voices. More Places. More Impact. Listening More Closely. Communicating More Personally. A Stronger Voice at Every Table That Matters From Awareness to Influence

Looking Ahead 5 Priorities for the Future Everything is connected The Future Is Possible Because of You

Transforming the Alpha-1 Journey. Advancing the Future.

56 57 58 59 60 61-62 63 64-65 66 67

A MESSAGE FROM THE PRESIDENT & CEO Building What Comes Next The Alpha-1 Foundation (A1F) has always believed that progress begins with possibility. The Alpha-1 community has spent decades building the knowledge, relationships and resources necessary to change the Alpha-1 patient experience. Today, that investment is creating momentum across every part of the Alpha-1 ecosystem. 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-1. We are finding new ways to identify people who may have Alpha-1. We are strengthening the network of informed healthcare providers. We are creating more personalized pathways for patients and families. We are advancing research and supporting the development of emerging therapies. And we are expanding the voice of the Alpha-1 community with policymakers, researchers, industry and the public. Our understanding of Alpha-1 continues to grow. New research is opening possibilities that once seemed out of reach. Emerging therapies are moving through development. More healthcare providers are becoming aware of Alpha-1. And more patients and families are finding opportunities to connect, learn and participate. With that said, a person cannot benefit from a treatment for a condition that they have not been diagnosed with. A diagnosis is not enough without access to informed care. Research cannot change lives without participants, investigators, providers, industry partners, and patients prepared to move discoveries forward. That is why A1F is focused not simply on individual programs, but on the entire Alpha-1 journey. We are building an integrated Alpha-1 ecosystem designed to move people from uncertainty to answers, from connection to informed care, and from today’s possibilities to tomorrow’s treatments. Think of the Alpha-1 Foundation as a patientcentric, Life Sciences Non-Profit Company. The progress highlighted in this report is the result of a dynamic community moving forward together. We are grateful to the funders, donors, volunteers, clinicians, researchers, industry partners and members of the Alpha-1 community who make this progress possible. And we are just getting started. Warm regards,

Scott Santarella President & CEO

Alpha-1 Foundation 2026 Programs Report

BUILDING THE ALPHA-1 ECOSYSTEM

A FUTURE WHERE EVERY ALPHA IS FOUND, INFORMED, SUPPORTED AND TREATED Alpha-1 Antitrypsin Deficiency (Alpha-1) affects people and families around the world, yet too many remain undiagnosed or lack access to informed care. The Alpha-1 Foundation exists to change that. Through research, education, detection, patient support, healthcare provider engagement, advocacy and philanthropy, we are building a stronger and more connected Alpha-1 community. Our work extends across the entire ecosystem. It begins with the first question of “Could this be Alpha-1?” to diagnosis, care, research participation, emerging treatments and the pursuit of a cure.

Alpha-1 Foundation 2026 Programs Report

OUR MISSION The Alpha-1 Foundation (A1F) is committed to finding a cure for Alpha-1 Antitrypsin Deficiency (Alpha-1) and to improving the lives of people affected by Alpha-1 worldwide.

OUR VISION A world where every person affected by Alpha-1 is diagnosed, informed, supported, and able to access the best possible care and treatment.

OUR FUTURE Transformative hope born from more than three decades of investment in building an infrastructure to advance the Alpha-1 field to benefit patients. We sit on the precipice of promising breakthroughs, and A1F, like the Life Science companies we partner with, is funding research, collaborating with healthcare providers, developing stakeholder partnerships, creating and enhancing patient programs and services, and leveraging science and technology to improve the lives, health and survival of Alphas worldwide.

Transforming the Alpha-1 Journey. Advancing the Future.

ALPHA-1 IS A GLOBAL COMMUNITY Our work knows no borders. Alpha-1 is a global condition, and our work reflects that reality. Through research collaborations, international education, global scientific meetings and conferences, advocacy, partnerships, and engagement with Alpha-1 organizations around the world, A1F is helping build a stronger global response to Alpha-1. This work connects clinicians, researchers, patient advocates and community leaders across borders so knowledge can move more quickly, promising ideas can be shared more broadly, and patients everywhere can benefit from a more informed and coordinated Alpha-1 community.

From the United States to Europe to South America and beyond, A1F works to ensure that the Alpha-1 community has a voice in the conversations shaping research, healthcare and treatment. Each partnership, conference and advocacy effort helps expand awareness, strengthen the global exchange of expertise and move the field closer to a future where every person affected by Alpha-1 can be found, informed, supported and connected to the best possible care. One condition. One global community. One shared future.

Alpha-1 Foundation 2026 Programs Report

FROM A TO Z, WE ARE BUILDING THE ALPHA-1 ECOSYSTEM From detection and diagnosis to support and treatment to research and hope. Our work touches virtually every part of the Alpha-1 experience.

Awareness

FibroScans

Biomarkers

Global Collaboration

Clinical Trials

Healthcare Providers

Detection

Informed Care

Journey

Education

Knowledge

Liver Health

Mentorship

National Conference

Outreach

Patients & Families

Quality of Care

Research

Support

Treatment

Understanding

Voice of the Patient

Worldwide Impact

eXcellence in Science

Your Support

Zero Alphas Left Undiagnosed

Every initiative represents a piece of something much larger: A connected ecosystem designed to improve the Alpha-1 experience today while building a foundation for a better tomorrow. Transforming the Alpha-1 Journey. Advancing the Future.

PROGRESS YOU CAN SEE Behind every number is a person, a family, a healthcare provider, a researcher, or a breakthrough made possible because the Alpha-1 community came together.

Patients & Families 7,050

Healthcare Providers

Patients and family members reached

136

1,094

A1F Clinical Resource Centers (CRCs)

A1F National Conference attendees

1,112

A1F Education Day participants

2,400 Peer-to-Peer connections

4,700

85% of CRCs had meetings with A1F

34 New A1F CRCs in 2026

Supported through direct assistance

Research $100 Million Invested in research

4,700+

$1 Million+ People reached

Alpha-1 Research Registry participants

80+

10+

Speaker Bureau engagements

20+

Policy/advocacy engagements

Clinical trials supported Emerging therapy companies engaged

130+ Research institutions engaged

Awareness & Policy

350+

3,635 A1F Video Library engagements

Alpha-1 Foundation 2026 Programs Report

MOMENTUM ACROSS THE MISSION: The numbers tell a story of continued growth. Across patient engagement, healthcare provider education, detection, research, fundraising and awareness, A1F continued to expand its reach and deepen its impact in 2026.

A1F Clinical Resource Centers

7,500

140

7,000

130

Number of Centers

Number of Patients

Alpha-1 Patient Reach

6,500 6,000 5,500 5,000 4,500

120 110 100 90

FY24

FY25

FY26

FY24

Fiscal Year

FY26

Fiscal Year

Alpha-1 Research Registry Enrollment

Alpha-1 Research Investment

4,800

4.0M

4,600

3.5M

Dollars ($) Invested

Number Enrolled

FY25

4,400 4,200 4,000 3,800

3.0M

2.5M

2.0M

3,600 FY24

FY25

FY26

Fiscal Year

1.5M

FY24

FY25

FY26

Fiscal Year

Growth is more than a larger number. It means: More people receiving trusted information. More Alphas finding connection and support. More healthcare providers recognizing Alpha-1. More researchers gaining access to the infrastructure necessary to advance discovery. More companies engaging with the Alpha-1 community. And more resources available to sustain the mission. Our growth reflects a community gaining momentum. Transforming the Alpha-1 Journey. Advancing the Future.

THE ALPHA-1 PATIENT JOURNEY

FROM DIAGNOSIS TO LIFELONG SUPPORT Every Alpha-1 journey begins somewhere. For some, it begins with years of unanswered questions. For others, it begins with an unexpected diagnosis. But wherever the journey starts, patients and families need more than a diagnosis...

They need information they can trust. They need access to knowledgeable healthcare providers. They need connection with others who understand. They need someone to help them navigate what comes next. The Alpha-1 Foundation is building a more connected patient journey. A journey designed to meet people where they are and provide the right information, resources, and support at the right time. A journey that begins as early as possible and provides trusted information, expert guidance, community connection and opportunities to participate in shaping the future of Alpha-1.

THE PATIENT JOURNEY Detect

Connect Understand

Access Informed Care

Engage

Advocate

Advance the Mission

ONE DIAGNOSIS. A COMMUNITY BEHIND IT.

Finding the Alpha-1 Foundation truly gave me the confidence to move forward. Know that A1F is full of resources and is there for you always. Betsy Scher — Illinois

A PATIENT’S JOURNEY Betsy’s words reflect what many patients and families need most after diagnosis: reassurance, trusted information, and a community that can help them take the next step with confidence.

The Beginning After Betsy learned she had Alpha-1, she faced the same questions many patients and families encounter: What does this mean? Who can help me? Where do I go from here?

Connection The Alpha-1 Foundation’s patient resources helped to provide her with an immediate connection to information, support, and the Alpha-1 community.

Education Through educational materials, the A1F National Conference, A1F Education Days, videos and digital resources, Betsy was able to build the knowledge she needed to better understand Alpha-1.

Expertise A1F Clinical Resource Centers, healthcare providers, the A1F Call Center and access to specialized professionals help her navigate her care.

Community Peer-to-Peer programs and A1F Support Groups remind patients, like Betsy, and families that they are not alone.

Participation Patients can become more than recipients of information. Like Betsy, they can become advocates, speakers, research participants, and volunteer leaders in the Alpha-1 community.

Transforming the Alpha-1 Journey. Advancing the Future.

KNOWLEDGE THAT MOVES WITH THE PATIENT Education is one of the Alpha-1 Foundation’s most important tools. Patients and families need information they can trust, and that information must evolve as science evolves. As the most valued content in the Alpha-1 market, A1F’s educational materials are scientifically and medically reviewed and continuously updated to reflect advances in Alpha-1 knowledge, care, and treatment.

Educational materials

23,000+ distributed/downloaded 140 Educational engagements

resources 530 Digital available Video 3,635 A1F Library users

WHAT’S UNDERWAY Updated Educational Materials A1F is refreshing its core educational resources to ensure patients, families, and healthcare providers have access to current, medically reviewed information. These updates help make Alpha-1 education clearer, more consistent, and easier to use across the patient journey.

Enhanced Virtual Education Virtual education is being strengthened to meet patients and families wherever they are, making trusted Alpha-1 information more accessible beyond inperson events. Expanded digital learning opportunities also allow A1F to reach more people with timely guidance and expert perspectives.

Alpha-1 Foundation 2026 Programs Report

Expanded Video Library A growing video library will give the community more flexible ways to learn about Alpha-1, hear from experts, and revisit important topics on demand. These videos can support newly diagnosed patients, long-time community members, and providers looking for concise, reliable education.

Alpha-1 101 Content New Alpha-1 101 content for both lung and liver education will provide a clear starting point for people who are newly diagnosed, newly connected to A1F, or just beginning to learn about Alpha-1. By simplifying the basics, A1F can help patients and families feel more informed and prepared for their next steps.

FibroScan Education FibroScan education will help patients and families better understand liver monitoring and why it can be an important part of Alpha-1 care. This content can also support conversations between patients and healthcare providers about liver health and informed follow-up.

A1F Leadership Video Content Video content featuring key opinion leaders and A1F leadership will bring trusted voices directly to the Alpha-1 community. These messages can help explain scientific progress, emerging priorities and A1F’s role in preparing patients, providers and partners for what comes next. Transforming the Alpha-1 Journey. Advancing the Future.

CONNECTING WITH PATIENTS EARLIER

The new Alpha-1 patient digital "Welcome Series" was created to establish an immediate connection with people entering the Alpha-1 community, especially those who may be newly diagnosed or newly engaged with A1F for the first time. At a moment when patients and families often have urgent questions, the series provides A1F with a way to reach out early with trusted information, reassurance and a clear pathway into the resources, contacts and programs available to support them. Instead of asking a newly diagnosed patient to figure everything out alone, A1F can begin providing guidance from the earliest stages of their journey. This approach helps patients understand what a diagnosis with Alpha-1 means, where to find reliable education, how to connect with informed care, and how to begin seeing themselves as part of a broader community that can offer support, experience and hope. The next evolution will bring greater personalization to the "Welcome Series”, creating a more tailored experience that reflects each patient’s needs, questions and stage in the Alpha-1 journey. Rather than delivering the same information to every new contact, A1F will be able to guide people toward the stories, education, expert perspectives and resources most relevant to where they are right now.

Welcome Series

82,410 emails delivered

35% Engagement/Open Rate

diagnosed patients & 750+ Newly family members connected 18

Alpha-1 Foundation 2026 Programs Report

WHAT’S NEXT Patient Stories Patient stories will help newly diagnosed or newly connected individuals see themselves reflected in the Alpha-1 community. By sharing real experiences, A1F can offer reassurance, reduce isolation, and show that many paths forward exist after diagnosis, ensuring no patient ever feels alone.

Video Content Video content will make key information easier to access, understand, and revisit at one’s own pace. Short, approachable videos can help explain complex topics, introduce A1F resources, and create a more personal connection beyond what written materials offer.

Key Opinion Leader Guidance Guidance from trusted Alpha-1 experts will help Alphas and families better understand the science, care, and treatment considerations, as well as emerging questions they may encounter. These perspectives can reinforce confidence by connecting patients to credible information from field leaders.

Alpha-1 Foundation Leadership Messages Messages from A1F leadership will help patients understand our commitment to walking alongside them throughout the journey. These communications can also connect individual patient experiences to the broader mission, including detection, education, informed care, research, and readiness for new treatments.

Persona-based Communications Persona-based communications will allow A1F to move beyond one-size-fits-all outreach and speak directly to different patient needs and experiences. This may include tailoring messages for newly diagnosed patients, family members, parents, caregivers, long-time community members, or people seeking more information about care, research, or support.

Personalized Resources Based on Where a Patient is on Their Journey As A1F learns more about each patient’s stage and needs, the “Welcome Series” can direct them to the most useful resources at the right time. This could include Alpha-1 basics, family testing information, Alpha-1 expert connections, navigating insurance, peer support, research opportunities, liver health education, or emerging therapy updates. The goal is simple: Help every Alpha navigate the community with confidence. Transforming the Alpha-1 Journey. Advancing the Future.

BRINGING PATIENTS TOGETHER The A1F National Conference remains the world's largest annual gathering of Alphas. In 2026, the conference continued to grow, bringing together patients, family members, healthcare professionals, researchers, and industry partners to create a more connected experience for the entire community. "The Future in Focus” theme represented the hopeful optimism encompassing the entire Alpha-1 community at this moment in time, recognizing the role each person plays in shaping the future.

1,094

Attendees

56%

31%

Alpha-1 patients & family members

First-time attendees

2026 HIGHLIGHTS First-Time Attendee Luncheon A First-Time Attendee Luncheon was introduced to welcome new members of the Alpha-1 community before the full conference experience began. This early connection helped firsttime attendees meet others, ask questions and feel more comfortable engaging throughout the event.

World-Class Thought Leaders Leading experts shared the latest Alpha-1 data, research updates, and clinical insights with patients and families. Their presentations helped ensure attendees had access to timely, credible information about the science and care landscape shaping the future of Alpha-1.

Comprehensive Educational Programming A broad range of sessions gave attendees opportunities to learn about Alpha-1 from multiple perspectives, including diagnosis, care, research, treatment development and living well with the condition. This programming helped deepen understanding and gave participants practical knowledge they could carry forward after the conference.

Peer-to-Peer Engagement Peer-to-peer connection was woven throughout the conference, so patients and families could learn not only from experts, but from one another. These moments helped strengthen community, reduce isolation, and remind attendees that they are part of a larger Alpha-1 network.

Alpha-1 Foundation 2026 Programs Report

Emerging Therapy Engagement Opportunities to connect directly with emerging therapy companies gave patients a meaningful role in learning about potential future treatment options. These meaningful conversations helped bring the patient perspective into the evolving treatment landscape and reinforced the importance of preparing the community for what may come next to advance our mission.

The A1F National Conference connects the entire Alpha-1 ecosystem.

WHAT’S NEXT First-time Attendee Experience A1F will expand the pre-conference introduction and orientation experience so that every first-time attendee feels welcomed, informed and connected from the moment they arrive. This enhanced experience will help newcomers understand what to expect, meet other members of the Alpha-1 community earlier including those in their local region and feel more confident participating in sessions, conversations and community-building opportunities throughout the conference.

Meet the A1F CRCs Additional opportunities will be created for patients and families to meet A1F Clinical Resource Centers (CRCs) and learn how specialized Alpha-1 care can fit into their journey. By giving attendees more direct access to CRC teams, A1F can help patients better understand informed care, ask practical questions and identify potential next steps for working with knowledgeable providers after the conference.

A1F EDUCATION DAYS A1F Education Days give patients, families and caregivers direct access to trusted Alpha-1 information in a more regional and approachable setting. With the increase in the total number of attendees each year, it is easy to see how these events extend A1F’s reach beyond the A1F National Conference and create additional opportunities for education, connection and support throughout the country.

6 A1F Education Days patients & 82% Alpha-1 family members

1,112 Attendees 23% First-time attendees

2026 HIGHLIGHTS Regional Support Group Meetings Regional meetings held at each A1F Education Day help translate national resources into local connection. They create spaces where Alphas and families can ask questions, hear from knowledgeable speakers, connect with peers, and learn about A1F programs in a setting that feels closer to home.

Support Group Leader Engagement Support Group Leaders serve as an important extension of A1F’s staff and mission. Their ongoing engagement with patients and families at A1F Education Days helps maintain community connection between major events, share trusted information, identify emerging needs, and guide people back to A1F resources when additional support is needed.

AATD-Liver Scan Study The AATD-Liver Scan Study demonstrates how education events can also become meaningful entry points for care awareness and early follow-up. By offering liver screening opportunities in connection with community programs, A1F can help patients better understand liver health, identify questions for their healthcare providers and reinforce the importance of informed monitoring as part of their Alpha-1 journey.

WHAT’S NEXT Continue Liver Screenings A1F will continue exploring opportunities to offer free liver screening in connection with A1F Education Days and other community programs, helping patients and families better understand liver health and prompting informed conversations with healthcare providers.

Meet the A1F CRCs Future A1F Education Days can create more structured opportunities for patients and families to meet A1F Clinical Resource Center (CRC) teams, learn what informed Alpha-1 care looks like and understand how A1F CRCs can support their ongoing journey.

Transforming the Alpha-1 Journey. Advancing the Future.

ALPHAS SUPPORTING ALPHAS Some of the most powerful support a patient can receive comes from someone who understands the journey firsthand. For many Alphas and their families, connecting with another person who has faced similar questions, decisions, and uncertainties can provide a kind of reassurance that clinical information alone cannot offer. Our Peer-to-Peer program and A1F Support Groups connect Alphas with Alphas, creating opportunities for understanding, encouragement, and shared experience. These programs help patients and families move from isolation to connection by giving them a trusted space to ask questions, hear from others who have lived the journey, and build relationships that can continue beyond a single conversation or meeting.

patients & family 7,050 Alpha-1 members reached

2,400 Peer-to-Peer connections

patients and families 4,700 Alpha-1 supported through direct assistance A1F Support Groups extend that connection into communities across the country, with Support Group Leaders serving as an important extension of A1F’s reach. By creating local and regional spaces for education, conversation, and mutual support, these groups help patients and families build relationships closer to home while staying connected to A1F’s trusted resources and national network.

WHAT’S NEXT A1F will continue expanding the A1F Support Group Network and strengthening the resources, training, and connections available to A1F Support Group Leaders and Peer Guides. This next phase will focus on equipping volunteer leaders with the tools, information, and support they need to confidently guide conversations, connect participants to A1F programs, and help more Alphas feel seen, supported, and less alone throughout their journey.

MEETING PATIENTS WHERE THEY ARE The Alpha-1 Foundation is increasingly using data and direct patient feedback to understand what people need and not what we assume they need. By listening more closely to patients, families, caregivers and community members, A1F can identify barriers earlier, respond with more relevant resources and design programs that reflect real experiences across the Alpha-1 journey.

Patient Survey Program Our patient survey program creates a direct feedback loop between the Alpha-1 community and A1F. It gives patients and families a structured way to share what they are experiencing, what information they need, where they encounter obstacles, and how A1F can better support them over time. These surveys help, not only A1F, but researchers and industry partners better understand the needs, challenges, information gaps, care experiences, program preferences, and emerging priorities of patients and families in real time. This perspective not only shapes the programs and resources of A1F but provides treatment companies with insight to better understand patient needs as new treatments are explored.

Persona-Based Engagement Patient personas captured through the "Member Center” will allow A1F to provide more relevant and personalized engagement throughout the patient journey. As A1F learns whether someone is newly diagnosed, living with Alpha-1 for many years, seeking informed care, supporting a loved one, interested in research, or looking for community connection, we can guide them toward the content, programs, and people most useful to their needs.

Alpha-1 Call Center The launch of the Alpha-1 Call Center adds another important dimension: real-time access to guidance. For patients and families who need help understanding diagnosis, finding resources, connecting with informed care or identifying the right next step, the Alpha-1 Call Center creates a more immediate and human point of entry into A1F’s network of support.

Transforming the Alpha-1 Journey. Advancing the Future.

WHAT’S NEXT Looking ahead, A1F will expand access to specialized guidance through the Alpha-1 Call Center so patients and families can receive more personalized support at the moments when they need it most.

Nurses via the Alpha-1 Call Center Provide patients and families with clinically informed guidance, help them prepare questions for their healthcare providers, and support navigation of common care and monitoring topics.

Genetic Counselors via the Alpha-1 Call Center Help individuals and families better understand inheritance, family testing, and what genetic information may mean for relatives across generations.

Specialized Guidance Based on Where Someone is on Their Journey Tailor support for newly diagnosed patients, long-time community members, caregivers, family members, people seeking informed care, and those interested in research or emerging therapies.

Real-time Navigation to Resources, Tools, and Support Make it easier for patients and families to move from a question to a next step, whether that means education, A1F CRC information, peer support, family testing resources, or opportunities to participate in the mission.

Alpha-1 Foundation 2026 Programs Report

BUILDING THE ALPHA-1 PATIENT ROADMAP The next evolution of the patient journey is creating a clearer roadmap from diagnosis through every stage of life with Alpha-1. This roadmap will help patients and families understand what questions to ask, what resources are available and how A1F can support them as their needs change over time. The Alpha-1 Patient Roadmap will connect the programs, resources, people and expertise already available across A1F into a more intentional experience. By organizing support around the questions patients actually face, A1F can make it easier for each patient to find the right next step, whether they are seeking basic education, informed care, peer support, family testing, research opportunities or guidance about emerging therapies. The Alpha-1 Patient Roadmap will provide guidance to patients who are newly diagnosed, those who have lived with Alpha-1 for years, and those seeking support at any stage of their journey.

A Diagnosis

What does it mean to have Alpha-1? Where do I find information?

Care & Treatment

What should my family know about Alpha-1 and testing?

Research How can I advocate? How can I help advance the future of Alpha-1?

I’ve been diagnosed with Alpha-1 Antitrypsin Deficiency.

Information & Education Who should manage my care? How do I connect with an expert? What treatments are available?

A Family Diagnosis

Should I participate in research for Alpha-1?

Getting Involved

It will also help families and caregivers understand how they can participate, ask informed questions, and connect with trusted resources alongside the patient. Our Future: One patient journey. One connected experience. The right resource at the right time. Transforming the Alpha-1 Journey. Advancing the Future.

THE HEALTHCARE PROVIDER JOURNEY

FROM AWARENESS TO ALPHA-1 INFORMED CARE An informed healthcare provider (HCP) can change the trajectory of an Alpha-1 journey by recognizing symptoms earlier, ordering appropriate testing and helping patients connect with specialized care and trusted resources. Yet, Alpha-1 remains unfamiliar to many healthcare professionals, which can contribute to delayed testing and diagnosis, missed opportunities for family testing, and inconsistent access to informed management. Our goal is to ensure that more healthcare professionals recognize Alpha-1, understand its complexities, know when and how to test, and have access to the expertise and resources necessary to provide informed care. A1F is doing this by strengthening provider education, expanding connections to A1F Clinical Resource Centers (CRCs) and creating more opportunities for collaboration across specialties. We want Alpha-1 recognition, testing, diagnosis and management to become a more natural part of healthcare practices, so fewer patients remain undiagnosed, and more families have access to the information they need.

THE HEALTHCARE PROVIDER JOURNEY Awareness

Recognize

Test

Connect

Collaborate

Treat

Lead

FROM ONE PATIENT QUESTION TO ALPHA-1 EXPERTISE

There may be instances where your selfless contributions lead to important information and discoveries that, in turn, can help a certain group of Alphas or the next generation of Alphas. This is where the Alpha-1 community shines. MIKE WELLS, MD

A HEALTHCARE PROVIDER’S JOURNEY Encounter A Healthcare Provider encounters a patient whose symptoms, family history or clinical presentation raise the possibility of Alpha-1.

Recognition Education and awareness resources help the provider understand when Alpha-1 should be considered.

Connection The Alpha-1 Foundation connects providers to educational resources and the A1F Clinical Resource Center (CRC) network.

Collaboration Through mentorship, multidisciplinary education, and the A1F CRC network, providers gain access to colleagues with Alpha-1 expertise.

Impact The result is a healthcare environment where more patients can receive timely informed, coordinated care.

Future The healthcare provider journey does not end with education. Our goal is to develop a connected community of providers who become educators, mentors, researchers, and advocates for Alpha-1.

Transforming the Alpha-1 Journey. Advancing the Future.

CONNECTING PROVIDERS. RAISING THE STANDARD OF CARE. A1F Clinical Resource Centers (CRCs) are at the heart of A1F’s strategy to improve informed care. They provide patients and families with access to clinicians who understand Alpha-1 and serve as anchors for education, collaboration, mentorship and research participation across the healthcare provider ecosystem.

136

A1F Clinical Resource Centers (CRCs)

New CRCs in 2026

85% of CRCs had face-toface meetings with A1F

2026 ACCOMPLISHMENTS Network Expansion Expanded and strengthened the A1F CRC network to help more patients find informed Alpha-1 care, while creating a stronger platform for provider education, collaboration and referral support.

A1F CRC Scorecard Established the A1F CRC Scorecard to better understand activity, engagement, patient access and opportunities for improvement across the network, giving A1F a clearer way to evaluate strengths, identify gaps and guide future investment.

A1F CRC Mentor Program Launched the A1F CRC Mentor Program to connect providers with experienced Alpha-1 clinicians, strengthen peer learning and help new or expanding centers build confidence in diagnosis, management and patient support.

Continuing Medical Education (CME) Updated CME programming to reflect current Alpha-1 knowledge and practical guidance for clinicians, helping providers recognize when to test, understand care considerations and connect patients to appropriate follow-up.

Standards of Care Developed a Standards of Care awareness campaign to promote more consistent recognition, monitoring, and management of Alpha-1, helping align provider understanding around what informed care can look like across different settings.

Alpha-1 Foundation 2026 Programs Report

A1F CRC Forum The A1F CRC Forum brought A1F Clinical Resource Centers together to strengthen collaboration, share best practices, and align around the future of Alpha-1-informed care. By convening CRC leaders as a connected network, A1F can support more consistent patient access, encourage peer learning, and identify opportunities to improve patient and physician education, referral pathways, and multidisciplinary support across centers.

Expanded Presence Expanded its presence at major medical society meetings, including the American Thoracic Society (ATS), American Association for the Study of Liver Diseases (AASLD), European Association for the Study of the Liver (EASL), European Respiratory Society (ERS), Latin American Thoracic Association (ALAT), American College of Chest Physicians (CHEST) and the American Association for Respiratory Care (AARC), to reach more healthcare professionals with Alpha-1 lung and liver education, research updates, and practical guidance. By exhibiting and participating in the clinical and scientific meetings and conferences where providers already gather, A1F can increase awareness, strengthen referral pathways, build new collaborations and help make Alpha-1 a more visible consideration across pulmonary, liver, respiratory care and multidisciplinary practices.

WHAT’S NEXT A1F Global Research Conference The A1F Global Research Conference will create an international forum for investigators, clinicians, industry partners, and patient leaders to exchange knowledge and advance shared Alpha-1 priorities. This convening helps connect scientific discovery with patient needs, strengthens collaboration across institutions and countries, and reinforces A1F’s role in bringing the global Alpha-1 research community together.

Discussion Around Treatment Roadmap A1F began discussions around developing a Treatment Roadmap to help the community prepare for the evolving therapeutic landscape. This work will help identify the education, clinical infrastructure, regulatory engagement, payer conversations, and patient support needed to ensure that future treatments can move from development to meaningful access for all patients.

Proactive Outreach to New HCPs A1F expanded proactive outreach to new healthcare professionals to increase Alpha-1 awareness among providers who may encounter undiagnosed patients in pulmonary, liver, respiratory care, and primary care settings. By engaging new physicians early, A1F can introduce trusted resources, encourage appropriate testing, and strengthen pathways to informed care.

HCP Speaker Training Healthcare provider speaker training helps prepare clinicians to share Alpha-1 information clearly, accurately, and consistently with professional and community audiences. By equipping providers to serve as trusted educators, A1F expands its ability to reach more healthcare professionals, elevate informed care practices, and strengthen the clinical voice behind Alpha-1 awareness.

Why It Matters The goal is not simply to increase the number of providers who know about Alpha-1. It is to increase the number of providers who know what to do about it.

Alpha-1 Foundation 2026 Programs Report

FROM ACCESS TO ACTIVATION Having informed healthcare providers is only part of the solution. The next challenge is helping patients identify those providers, understand how to access them, and feel supported as they move from awareness to care. Patients need to be able to find informed providers, connect with them successfully with ease, and understand how specialized care fits into their ongoing Alpha-1 journey.

A1F Clinical Resource Center (CRC) Access Program The Alpha-1 Foundation is exploring a campaign designed to make specialized Alpha-1 care more accessible by helping patients understand the A1F CRC network, strengthening referral pathways, and creating clearer tools for navigation.

WHAT’S NEXT Find Informed Care Sooner Help patients identify informed providers through an expanded A1F CRC network, clearer provider information, and stronger multidisciplinary care connections.

Connect Make the path to an A1F CRC easier to navigate by giving patients clearer next steps, better referral guidance and practical tools for connecting with specialized Alpha-1 expertise.

Collaborate Strengthen collaboration among providers through mentorship, shared learning and CRCto-provider relationships that help extend Alpha-1 expertise beyond individual centers.

Measure Use the A1F CRC Scorecard and other evaluation tools to understand engagement, identify gaps, strengthen accountability and guide future improvements across the care network.

Expand Continue building a national and global network of Alpha-1-informed care so more patients can access expertise regardless of where they live or where their journey begins.

Transforming the Alpha-1 Journey. Advancing the Future.

ALPHA-1 DETECTION

HELPING ALPHAS FIND THEIR ANSWER One of the greatest challenges facing the Alpha-1 community is one of the simplest to state: Too many people with Alpha-1 don’t know they have it. They are on an unknown journey that leads to different paths… silent progressive lung and/or liver disease, symptomatic misdiagnosis or years of unanswered questions. They may wait an average of 8.3 years, and see two to three doctors before being diagnosed. Some may receive an early answer, but others go a lifetime without knowing. After decades of various detection strategies and approaches, 9 out of 10 remain unaware. The time is now to accelerate awareness and detection for those at risk for Alpha-1 so they have the answers they need to inform their decisions. The Alpha-1 Foundation is taking steps to address this need through a centralized approach to Alpha-1 detection with AlphaDetect. AlphaDetect is a non-profit subsidiary of the Alpha-1 Foundation with a mission to accelerate detection to uncover everyone genetically at risk for Alpha-1. The focus of AlphaDetect is to remove barriers to detection through education and support earlier sustainable testing, in accordance with clinical guidelines and recommendations. To achieve this, AlphaDetect offers healthcare provider engagement, resources, support and free genetic testing processed at AlphaDetect’s dedicated Alpha-1 lab in Research Triangle Park, NC. AlphaDetect also provides the opportunity for those identified to be at risk for Alpha-1 to enter a community of support through the Alpha-1 Foundation. AlphaDetect represents a major evolution in our approach: bringing organizations, healthcare professionals, technology and the Alpha-1 community together around a common goal: helping those with Alpha-1 receive their answer earlier. This begins their journey of connection and support, and helps to remove their questions and uncertainty. Earlier detection can create opportunities for informed lifestyle changes, family testing and research participation. It also gives patients and families the chance to understand Alpha-1 before complications progress so they can make informed decisions with knowledgeable clinicians about their care. Together, our goal is not simply to increase detection activity, but to ensure that those who have Alpha-1 are identified earlier and connected quickly to trusted information and support.

Transforming the Alpha-1 Journey. Advancing the Future.

BUILDING A SUSTAINABLE DETECTION INFRASTRUCTURE 2026 PROGRESS AND BEYOND AlphaDetect Infrastructure Built the foundation for a sustainable detection infrastructure. Over the past year, AlphaDetect has grown from insights gathered during a strategic cross community survey and input from our inaugural Alpha-1 Detection Summit, to a fully built strategic approach and team, including an Alpha-1 dedicated lab and collection kits for free genetic testing.

AlphaDetect Sponsorships Established and expanded AlphaDetect support by engaging inaugural organizations in the collaborative and collective effort to identify undiagnosed Alphas.

AlphaDetect Branding Advanced AlphaDetect branding and trademarks to support a clearer, recognizable detection platform with healthcare professionals and the broader community.

Immediate Support Developed a Welcome Series so newly identified patients who opt in can receive timely education and support.

Healthcare Provider Awareness Strengthened healthcare provider awareness, engagement and support for testing aligned with clinical guidelines and recommendations.

Expanding Pathways for Detection Building detection connections to create multiple pathways for earlier identification.

Alpha-1 Foundation 2026 Programs Report

ELEVATING ALPHA-1 AWARENESS AND EMBEDDING DETECTION STRATEGIES FROM AWARENESS TO ACTION A first step for detection is to elevate education and awareness for Alpha-1. The next step is working with the healthcare provider community to embed strategies as a routine standard of care aligned with clinical guidance and recommendations. It requires collaboration, support, proven strategies and practical tools. A1F and AlphaDetect are committed to work with the Alpha-1 community to support a centralized and unified approach to detection and support.

2026 ACCOMPLISHMENTS GOLD Guidelines Updated Alpha-1 detection statements, including collaboration with A1F’s Medical and Scientific Advisory Committee (MASAC) and additional clinical leadership to help ensure clinicians have current guidance on Alpha-1 detection.

Liver Guidelines The Liver Guidelines have been enhanced and expanded through engagement with the American Gastroenterological Association (AGA), the American Association for the Study of Liver Diseases (AASLD), and the European Association for the Study of the Liver (EASL) to elevate Alpha-1 liver considerations, clinical guidance, and earlier recognition of liver involvement.

Detection Grant Process A dedicated grant opportunity and review process designed to specifically support innovation in Alpha-1 detection, encourage new ideas from investigators, and help test proven practical approaches that could identify undiagnosed Alphas earlier.

Detection Playbook A working thought leader group established to translate proven detection implementation protocols and strategies, informed by real-world clinical experience in collaboration with leading Alpha-1 liver and lung clinicians, into actionable resources, workflows and support for both the practice and institutional levels.

Transforming the Alpha-1 Journey. Advancing the Future.

VA Pilot An Alpha-1 detection pilot was initiated within the United States Department of Veterans Affairs (VA) system to explore how targeted outreach, clinical education and testing pathways can help identify veterans who may be living with undiagnosed Alpha-1.

Florida COPD and Alpha-1 Coalition Collaboration established to strengthen detection among people with Chronic Obstructive Pulmonary Disease (COPD) by increasing awareness of Alpha-1 as an underlying genetic cause, supporting provider education and creating opportunities to connect at-risk individuals with testing and follow-up resources.

Family Testing Enhanced messaging to encourage family members to consider testing, understand inherited risk and access information that can help families make informed decisions together.

Open Evidence AI A pilot will be created to explore how emerging technology can support Alpha-1 detection by identifying patterns, gaps and opportunities that may help healthcare professionals recognize individuals who should be considered for Alpha-1 testing.

EXPANDING DETECTION REACH The future of Alpha-1 detection will require meeting people where they are when they have questions. Detection must ultimately reach beyond healthcare systems and extend into families, communities, digital channels and everyday health conversations where people are seeking answers long before they reach an Alpha-1 specialist. A key strategic imperative is to create scalable, multi-channel approaches that reach those most at risk, ensuring Alpha-1 detection becomes accessible, equitable, and community-driven.It is important to not stop at information alone, but to provide a sustainable pathway of support for those impacted.

Ensuring all Alphas have earlier answers and the support they need to inform their own personal journey.

Alpha-1 Foundation 2026 Programs Report

WHAT’S NEXT Expanded Connections Expand detection connections to create more entry points for identification, outreach, and diagnosis. By working with healthcare systems, community organizations, advocacy partners, and other aligned groups, A1F and AlphaDetect can bring Alpha-1 awareness and testing opportunities into more settings where undiagnosed Alphas may already be seeking answers.

Family Testing Strengthen family testing so relatives understand inherited genetic risk and can make informed choices about testing. Because Alpha-1 can affect multiple members of a family, clearer education and outreach can help relatives understand why testing matters, how to talk about inherited risk, and where to turn for reliable information after results are received.

Healthcare Provider (HCP) Outreach Expand healthcare provider detection efforts through education, guidelines, tools, sustainable testing protocols within existing clinical workflows, and targeted outreach. These efforts will help more clinicians recognize when Alpha-1 testing should be considered, understand appropriate testing pathways aligned with clinical guidance, and connect patients to follow-up resources, reducing the chance that symptoms are treated without identifying the underlying cause.

Technology Evolve innovation through use of technology and artificial intelligence (AI) to identify patterns and opportunities that may help accelerate Alpha-1 detection. Responsible use of data can help reveal where patients are hidden and where testing gaps exist. This will support increased targeted education and help identify populations that may benefit from Alpha-1 awareness, screening, or support. Also, advance next-generation detection beyond current technology and delivery to increase access and remove barriers to testing for both liver and lung.

Connecting the Patient Journey Create a connection to support the patient journey so those diagnosed with Alpha-1 receive trusted information, compassionate support, and a community of people who understand what they are going through. The goal is for every newly diagnosed Alpha to have a clear next step after diagnosis, including access to A1F resources, education, the A1F Welcome Series, A1F CRC information, family testing guidance and opportunities to engage with the broader mission. Transforming the Alpha-1 Journey. Advancing the Future.

RESEARCH & THE EVOLVING TREATMENT LANDSCAPE

BUILDING THE INFRASTRUCTURE FOR THE NEXT GENERATION OF TREATMENTS

$3.8 M

169

Awarded in 2026

Alpha-1 Research papers

Grants

H RC

RESEA

For over three decades, the Alpha-1 Foundation has invested in the science necessary to change what is possible for people affected by Alpha-1. That sustained commitment has helped move Alpha-1 research from isolated questions to a coordinated ecosystem capable of supporting discovery, clinical development and future treatment access.

DISCOVER INVEST

Applications

That investment has built a research ecosystem BUILD spanning investigators, institutions, patients, clinical INFRASTRUCTURE trials, the Alpha-1 Research Registry, the A1F Therapeutic Development Network (TDN), and emerging therapies. Each part strengthens the others: patients make research possible, researchers advance TEST discovery, infrastructure supports clinical trials, and industry partners help move promising science toward potential treatments.

In 2026, the ecosystem continued to grow as A1F deepened its support for research infrastructure, expanded engagement with emerging therapy companies, and strengthened the systems that help connect patients, investigators, and clinical development opportunities. Emerging Therapies 20+ Emerging therapy companies engaged With 7 of them presenting at the A1F National Conference – the most ever! Transforming the Alpha-1 Journey. Advancing the Future.

ADVANCE

ENGAGE REGULATORS PREPARE FOR ACCESS REACH PATIENTS

ENT

EATM R T

In 2026, the Alpha-1 Foundation reported more than $100 million in cumulative research investment, more than $3.8 million invested during FY2026, support for research across 130 institutions in 14 countries, and more than 4,700 Alpha-1 Research Registry participants.

RECRUIT

TURNING PARTICIPATION INTO POSSIBILITY ALPHA-1 RESEARCH REGISTRY The Alpha-1 Research Registry is one of the Alpha-1 Foundation’s most important and valuable research assets because it turns individual patient participation into shared knowledge. It gives researchers a way to better understand Alpha-1 across the community and creates a foundation for studies that can advance diagnosis, care, and treatment development. Every participant contributes to a resource that helps researchers better understand Alpha-1 and helps investigators identify and recruit individuals for clinical studies. For patients, participation is a way to contribute to progress even when they are not enrolled in a specific trial. The Alpha-1 Research Registry also represents something larger: a direct connection between the Alpha-1 patient community and the research that may shape its future. It helps ensure that patient experience, patient data, and patient participation remain central to scientific progress.

Alpha-1 Research 4,735 Total Registry participants

500+ New participants

studies utilizing 10 Clinical Alpha-1 Research Registry data

or posters on 6 Publications the Alpha-1 Research Registry

Clinical Trial Support trials 3 Clinical supported

Alpha-1 patients engaged 250+ directly for clinical trials

A1F THERAPEUTIC DEVELOPMENT NETWORK The Alpha-1 Foundation Therapeutic Development Network (TDN) helps advance the search for better treatments and, ultimately, a cure by connecting Alpha-1 experts, research centers, patients, and industry partners through a coordinated clinical research infrastructure. By making it easier for patients and families to learn about studies, participate safely, and have their real-life experiences reflected in research, the TDN strengthens the bridge and time between scientific discovery and patient impact.

Why the TDN Matters Clinical research is essential to advancing care for Alpha-1, but finding and joining studies can feel overwhelming for patients and families. The TDN helps reduce that gap by making research opportunities more visible, supported, and connected to trusted Alpha-1 expertise. The TDN was created by A1F to make clinical research more accessible, more patientcentered, and more connected to the needs of the entire community. It helps ensure that research participation is not limited by geography, uncertainty, or lack of information.

TDN centers

7 Studies utilizing the TDN

375+

Participants supported

ALPHA-1 BIOMARKER CONSORTIUM (A1BC) The Alpha-1 Biomarker Consortium (A1BC) shows how Alpha-1 Research Registry participation can help answer some of the most important questions in Alpha-1 research. Through this three-year study, researchers are following 270 Alpha-1 Research Registry participants to better understand how the condition changes over time and to identify biological signals that may help predict which Alphas are more likely to experience rapidly worsening lung function. By collecting blood and sputum samples and using high-resolution CT imaging over time, the A1BC Study is building a clearer picture of why Alpha-1 progresses differently from person to person. That knowledge matters because some Alphas remain stable for years, while others progress more quickly, and clinicians still need better tools to recognize who may be at greatest risk. The insights generated through A1BC can strengthen clinical trial design, support more informed monitoring, and help move the field closer to earlier intervention before serious lung complications develop. Transforming the Alpha-1 Journey. Advancing the Future.

PIMZ LONGITUDINAL COHORT The PiMZ Longitudinal Cohort, known as the PiMZ LogiC Study, extends this work to an important and often overlooked group: PiMZ Alphas living with COPD or other obstructive lung disease. As research continues to raise new questions about risk in this population, the study will help clarify how Alpha-1 may contribute to lung disease progression for PiMZ individuals. By following biomarkers, clinical events and CT imaging features over time, the PiMZ LogiC Study will add important knowledge about the full spectrum of Alpha-1 experience and help inform how future studies are designed for patients with different genotypes and risks.

WHAT’S NEXT Alpha-1 Research Registry Recruitment Continue recruiting for the Alpha-1 Research Registry so more patients can contribute to the data needed to advance Alpha-1 research.

Data Enhancement Enhance data collection so researchers can ask more meaningful questions and identify patterns that may inform care and treatment development.

Resource Alignment Align the Alpha-1 Research Registry and TDN infrastructure more closely with emerging therapies, so the community is prepared for future clinical trial needs.

Clinical Trial Support Continue supporting clinical trial recruitment by connecting eligible patients with appropriate opportunities to actively participate.

PREPARING FOR A NEW ERA OF TREATMENT The treatment landscape for Alpha-1 is evolving. As new approaches move from scientific discovery toward clinical development, the Alpha-1 Foundation’s role must evolve with them. Emerging therapies are creating new possibilities and with that expansion comes new responsibilities. A1F is helping prepare the community for that future by strengthening clinical trial infrastructure, connecting patients with opportunities to participate in research, engaging emerging therapy companies and bringing the patient perspective into conversations about development, meeting with regulators and beginning conversations about treatment access. 2026 saw the Alpha-1 Foundation engage with over 20 emerging therapy companies, representing the highest-to-date engagement with companies developing potential future treatments for Alpha-1.

2026 ACCOMPLISHMENTS Clinical Trial Support Supported clinical trial recruitment and participant engagement to help connect eligible patients with research opportunities.

Alpha-1 Research Registry Growth Advanced Alpha-1 Research Registry growth and enhancement so patient data can continue supporting Alpha-1 discovery and clinical development.

Published Findings Published Alpha-1 Research Registry findings in the European Medical Journal (EMJ), extending the reach of Alpha-1 research insights to a broader, global scientific and clinical audience.

Liver Screening Study Implemented the AATD-Liver Scan Study to strengthen understanding of Alpha-1 liver involvement and monitoring needs.

Transforming the Alpha-1 Journey. Advancing the Future.

Patient Voice in Emerging Therapy Development Increased engagement with emerging therapy companies to bring the patient voice and A1F infrastructure into treatment development conversations.

A1F Virtual TDN Established and operationalized the A1F Virtual TDN to expand access remotely to clinical trial infrastructure and expertise.

Alpha-1 Biomarker Consortium (A1BC) Expansion Provided A1BC Extension support to sustain important research infrastructure and community participation.

Polymer Workshop Convened the Gordon L. Snider Critical Issues (GLS) Workshop on AAT Polymers: Disease Pathogenesis, Detection, and Therapeutic Targeting to advance scientific discussion around polymer biology and therapeutic opportunities.

Strategic Research Agenda Workshop Organized the Gordon L. Snider Critical Issues (GLS) Workshop entitled "Alpha-1 Foundation Research Infrastructure: Building for the Future" to help define priorities for the next phase of Alpha-1 research.

Bio-Sample Expansion Established a Bio-Sample Collection Working Group to explore infrastructure needed for future studies and therapeutic development. Discussion will focus on types of samples and potential sites to collect them.

Scientific Conferences Expanded A1F’s presence at scientific conferences to share progress, build partnerships and elevate Alpha-1 priorities.

Grants Award Program Growth Grew the A1F Research Grants Award Program to support innovative investigations and strengthen the pipeline of Alpha-1 science. 48

Alpha-1 Foundation 2026 Programs Report

PREPARING BEFORE TREATMENTS ARRIVE A successful treatment is only transformative if patients can access it. That means the work of preparing for new therapies must begin before treatments arrive, with patients, providers, regulators, payors and partners aligned around what the community will need. That is why A1F is beginning to engage in conversations that extend beyond research and development. A1F is helping prepare the Alpha-1 ecosystem for regulatory decisionmaking, coverage considerations, patient education and real-world access challenges that may accompany new treatment options.

WHAT’S NEXT U.S. Food & Drug Administration (FDA) Listening Session Bring the patient and Alpha-1 community perspective directly into regulatory conversations, so decision makers understand lived experience, unmet needs, treatment priorities and the outcomes that matter most to patients and families.

Payor Summit Begin conversations around the future of treatment access, coverage, and the needs of patients and providers so the community is better prepared for reimbursement, affordability and implementation questions as new therapies advance.

Emerging Therapy Education Create accessible information, including easy to understand videos, to help patients understand an evolving treatment landscape, ask informed questions and feel prepared to discuss potential future options with knowledgeable healthcare providers.

Investigators’ Meeting Bring Alpha-1 researchers together to identify opportunities, share knowledge and strengthen collaboration across multiple disciplines so the field can focus on the most urgent scientific questions and accelerate progress toward better treatments for Alpha-1.

A1F Global Research Conference Continue creating a global forum for advancing Alpha-1 research by convening investigators, clinicians, industry partners and patient leaders from across the world around shared priorities and emerging scientific opportunities.

Transforming the Alpha-1 Journey. Advancing the Future.

Pediatric Registry Explore opportunities to strengthen pediatric participation and representation so research can better reflect the full Alpha-1 lifespan and inform future care, monitoring and treatment considerations for children and families.

A1F Research Agenda Update the Alpha-1 Foundation’s Strategic Research Agenda to reflect the rapidly evolving science, incorporate input from investigators and community stakeholders, and guide investment toward the questions most likely to change diagnosis, care and treatment.

THE BIGGER PICTURE We Are Building the Pathway to Treatment The Alpha-1 Foundation’s role is not simply to fund research. It is to ensure that research is connected to patients, informed by community needs, supported by the right infrastructure, and positioned to become meaningful progress. It is to build an ecosystem that allows research to become progress from discovery to clinical trials, from clinical trials to regulatory engagement, and from regulatory progress to ultimately, patient access.

Patients provide participation. The Alpha-1 Research Registry provides data. Investigators provide discovery. The TDN provides infrastructure. Emerging therapy companies provide innovation. The Alpha-1 Foundation brings the community together. Regulators help establish the pathway. Payors will help determine access. Patients ultimately benefit. The next generation of Alpha-1 treatments will require more than scientific breakthroughs. It will require an ecosystem ready to move those breakthroughs forward. 50

Alpha-1 Foundation 2026 Programs Report

FUNDRAISING

FUELING EVERY STEP FORWARD Every accomplishment in this report has something in common: Someone believed it was possible and invested in making it happen. Donor support gives A1F the ability to move with urgency, respond to opportunities, and sustain the long-term work required to transform the Alpha-1 journey. Philanthropy provides the flexibility, innovation, and sustained investment required to move the mission forward, from supporting patients today to accelerating the research and infrastructure that can transform tomorrow. It allows A1F to invest in work that is urgent, emerging, and strategic, even before traditional funding pathways exist. It provides resources that allow A1F to invest in research, expand detection, support patients, educate healthcare providers, build awareness, and respond to new opportunities. Every gift helps strengthen the ecosystem that connects Alphas to answers, care, community, and hope.

THE POWER OF PHILANTHROPY Your Investment at Work Build a stronger network of Alpha-1 informed care.

Informed Providers

Emerging Therapies

Prepare for new treatment possibilities.

Find more people with Alpha-1.

Detection

Research

Advance discovery and clinical development.

Help patients and families navigate their journey.

Access to treatments

Patient Support

Help patients and families navigate their journey.

Ensure the Alpha-1 voice is heard.

Advocacy

A Cure for Alpha-1

Move closer to a future without Alpha-1.

Donor Support

Donor support helps A1F strengthen every part of the Alpha-1 journey, from finding more people with Alpha-1 and connecting patients and families with support to building a network of informed healthcare providers and expanding access to care. Your generosity also fuels research, prepares the community for emerging therapies, amplifies the Alpha-1 voice, and moves us closer to the ultimate goal: a cure for Alpha-1. Your support doesn’t fund one program. It fuels the entire Alpha-1 mission. 52

Alpha-1 Foundation 2026 Programs Report

BUILDING THE NEXT GENERATION OF PHILANTHROPY In 2026, the Alpha-1 Foundation continued to see growth across multiple sources of philanthropic support, reflecting both the strength of long-time donor commitment and the opportunity to engage new supporters in the future of Alpha-1. This growth helps A1F sustain core mission programs while also investing in emerging priorities such as detection, treatment readiness, personalized patient engagement, and expanded provider education. The opportunity ahead is significant because the Alpha-1 landscape is changing quickly. As detection expands, research accelerates, and emerging therapies move closer to patients, A1F must be prepared with the resources, partnerships, and donor community needed to meet the moment. As A1F expands its work across detection, patient support, informed care and treatment development, we must also expand the resources available to support that work. Building the next generation of philanthropy means engaging donors earlier, deepening relationships, diversifying revenue, and inviting supporters to invest in the full Alpha-1 ecosystem.

Mission Mover Campaign Expand community participation and support for the Alpha-1 Foundation’s mission by giving donors, Alphas and families a clear way to take action. The Mission Mover Campaign will help connect personal commitment to measurable progress across patient support, detection, research, and education.

Donor Impact Dinners Create opportunities for donors and supporters to hear directly about the impact of A1F’s work, deepen their relationship with A1F and understand how philanthropy is fueling progress. Recognition of these events through the Chronicle of Philanthropy further elevated the importance of sustained major giving and donor leadership in advancing the mission.

Transforming the Alpha-1 Journey. Advancing the Future.

A1F Board of Directors Networking Activate the relationships and networks of A1F leadership and Board Members to open doors to new donors, strategic partners, and community champions who can help scale the mission.

Major Gift Pipeline Continue building a strong pipeline of individuals capable of making transformational investments in research, informed care, patient support, and the infrastructure needed for the next era of Alpha-1 progress.

Alpha-1 Legacy Society Continue to grow the planned giving program and invite more supporters to include Alpha-1 in their long-term philanthropic plans, ensuring that A1F can sustain research, education, informed care, and support for generations of patients and families to come.

Corporate Diversification Build new partnerships across healthcare, life sciences, technology, and aligned industries to diversify support and expand the network of organizations invested in the future of Alpha-1. This includes corporate partners whose interests align with Alpha-1 diagnosis, care, research, and community impact. This diversification strengthens A1F’s financial resilience and broadens the network of partners invested in the mission.

Monthly Giving Continue growing donor retention, reactivation, and monthly giving so supporters at every level can participate consistently in advancing the Alpha-1 mission. Monthly giving creates a reliable base of support that helps A1F plan ahead, sustain core programs, and invite more people into long-term partnership with A1F.

Alpha-1 Foundation 2026 Programs Report

Building Friends for a Cure (BFC) Events Increase participation and engagement in BFC events, creating more opportunities for the community to gather, raise funds, and connect personal stories to mission impact. These events continue to serve as visible expressions of commitment, creativity, generosity, and shared purpose across the Alpha-1 community.

AI-Enabled Donor Engagement Use technology and data insights to identify donor interests, personalize outreach, and engage supporters more strategically around the parts of the mission that matter most to them. Introduce AI-supported approaches to identifying and engaging mid-level donors more strategically. By using data to better understand donor interests, giving patterns and engagement opportunities, A1F can communicate more personally and invite supporters to engage with A1F’s mission.

Trust & Accountability Maintain key nonprofit accreditations and ratings, including Better Business Bureau (BBB) Wise Giving Alliance, Candid, National Health Council, and Charity Navigator. These indicators of transparency and accountability help donors donate with confidence, knowing their support is stewarded responsibly and directed toward meaningful mission impact.

A bold future for Alpha-1 requires a strong and sustainable Foundation behind it.

AWARENESS & PUBLIC POLICY

MAKING ALPHA-1 IMPOSSIBLE TO IGNORE Changing the Alpha-1 landscape requires more than great programs. It requires public understanding, policy engagement, and a strong community voice that can help shape the decisions affecting diagnosis, care, research, coverage, and access. It requires awareness that reaches patients, families, clinicians, policymakers and the public before Alpha-1 is missed or misunderstood. It requires a strong patient voice that can explain lived experience, identify unmet needs, and make the urgency of diagnosis, care, and access impossible to overlook. It requires informed decision-makers who understand Alpha-1 and consider the needs of this community when shaping policy, coverage, research priorities, and healthcare systems. And it requires A1F to be part of the conversations shaping healthcare, research, treatment access and public policy, so the community’s needs are represented before decisions are ever finalized.

Awareness

Patient Voice

Influence

Action

Change

A1F is expanding how the Alpha-1 community tells its story and shapes the future. Transforming the Alpha-1 Journey. Advancing the Future.

MORE VOICES. MORE PLACES. MORE IMPACT. The patient's voice is essential as it brings lived experience into the rooms where decisions are made. Patients and families can explain what delayed diagnosis feels like, why informed care matters, what treatment access means in real life, and how research priorities connect to daily experience. By elevating more voices in more places, A1F helps ensure that Alpha-1 is not just understood as a condition, but as a lived journey affecting people, families and communities.

A1F Speaker Bureau The Speaker Bureau extends A1F’s voice by bringing the lived experiences and perspectives of patients, families and Alpha-1 leaders to audiences that need to hear them. Through these professionally trained speakers, A1F can make Alpha-1 more visible, more relatable and more urgent for healthcare providers, policymakers, donors, industry partners and the broader public.

Professionally Trained Speakers

1,000+

80+

Audience Impressions

Speaking Engagements in the last 8 months

Alpha-1-To-One Magazine The redesigned Alpha-1-To-One magazine proves to be the most widely read resource in the Alpha-1 community based on survey data. It continues to provide an important platform for education, community stories, research updates, and Alpha-1 Foundation news. By combining trusted information with patient experiences and mission progress, the magazine helps keep the community informed, connected, and engaged throughout the year.

Issues per year 58

25+

37,500

Articles

Distribution per issue Alpha-1 Foundation 2026 Programs Report

LISTENING MORE CLOSELY. COMMUNICATING MORE PERSONALLY. The Alpha-1 Foundation is building new ways to understand who is in our community and what they need at each stage of the Alpha-1 journey. By listening more closely and using engagement data responsibly, A1F can design programs and communications that reflect real patient experiences instead of relying on assumptions. The launch of patient persona capture through the A1F Member Center creates an opportunity to move beyond one-size-fits-all communications. It will help A1F better understand whether someone is newly diagnosed, a long-time community member, a caregiver, a family member, or someone seeking care, connection or education. Instead, we can begin tailoring information and engagement based on where people are in their Alpha-1 journey, what questions they are asking, and what type of support they are seeking. This more personal approach can help patients find relevant resources faster and feel more directly connected to A1F’s mission.

Listen Use patient surveys, A1F Member Center data, call center insights, and direct community feedback to better understand what patients and families need, where they encounter gaps, and how their priorities change over time.

Segment Identify meaningful differences among newly diagnosed patients, long-time community members, caregivers, family members, research participants, and people seeking care so A1F can better understand the distinct experiences, questions, and priorities within the Alpha-1 community.

Personalize Deliver more relevant content, resources, and invitations based on where each person is in their Alpha-1 journey, helping patients and families receive information that feels timely, useful, and connected to their needs.

Engage Create stronger connections by guiding people toward the programs, peers, providers, events, research opportunities, and advocacy pathways most likely to support them at their current stage.

Act Use what we learn to improve programs, refine communications, close resource gaps, and make patient support more responsive, measurable, and aligned with the real needs of the community. Transforming the Alpha-1 Journey. Advancing the Future.

A STRONGER VOICE AT EVERY TABLE THAT MATTERS Alpha-1 policy work can influence detection, research, patient services, treatment access, and healthcare coverage by helping decision-makers understand where current systems fall short and what the community needs to move forward. The Alpha-1 Foundation continues to bring the Alpha-1 perspective to conversations with policymakers, regulators, healthcare leaders, and other decisionmakers so the needs of patients, families, providers, and researchers are visible in the policies and systems that shape care.

350+

Policy/advocacy engagements

250+

150+

Policymakers & decisionmakers reached

Alpha-1 Patient Advocates

2026 ENGAGEMENT U.S. Food and Drug Administration (FDA) Listening Session Planning an FDA Listening Session to ensure the patient voice informs regulatory understanding of unmet needs, meaningful outcomes and treatment priorities.

Payor Summit Continue Payor Summit planning to prepare for future conversations about coverage, affordability and access as the treatment landscape evolves.

Global Community Engage with European Parliament stakeholders to elevate Alpha-1 awareness and strengthen international understanding of the community’s needs.

Awareness Expand Alpha-1 awareness initiatives that help more people recognize the condition, understand the importance of testing, and connect to trusted resources.

Healthcare Outreach Support healthcare providers and patient advocacy by equipping providers, patients and families with information and opportunities to speak to issues affecting diagnosis, care and access.

Global Awareness

Strengthen global awareness so Alpha-1 is represented in international scientific, clinical, and policy conversations. Alpha-1 Foundation 2026 Programs Report

FROM AWARENESS TO INFLUENCE The Alpha-1 Foundation’s future awareness and policy strategy will focus on ensuring that Alpha-1 has a stronger voice wherever decisions affecting our community are made. That means moving from visibility alone to influence and helping patients, providers and partners shape conversations about diagnosis, care standards, treatment access, research priorities and health policy.

A1F PRIORITIES Payors Prepare for conversations about treatment access, coverage and affordability so payer decision-making reflects the realities patients and providers may face as new therapies advance.

FDA Ensure the patient's voice is represented in regulatory discussions by bringing forward lived experience, unmet needs and community priorities that can inform how future treatments are evaluated.

Transforming the Alpha-1 Journey. Advancing the Future.

Patient Leadership Expand opportunities for Alphas and families to speak for themselves through advocacy, storytelling, public education, and leadership roles that place lived experience at the center of decision-making.

Global Awareness Strengthen Alpha-1 visibility internationally by engaging global partners, sharing knowledge across borders, and ensuring the condition is represented in scientific, clinical, and policy forums around the world.

Digital Education Make trusted information easier to find, understand, and share through digital resources that support patients, families, providers, and advocates wherever they are.

Personalized Communication Use patient personas, survey feedback and engagement data to make communications more relevant, timely and responsive to what different members of the Alpha-1 community need at each stage of their journey. Our goal is simple: ensure Alpha-1 is recognized, understood and represented wherever decisions affecting our community are made.

LOOKING AHEAD

THE NEXT CHAPTER OF ALPHA-1 The work described throughout this report is connected.

Detection leads to diagnosis.

Diagnosis creates an opportunity for education and support.

Support connects patients to informed care.

Informed providers create opportunities for better management and research.

Research creates the possibility of new treatments.

New treatments create the need for access.

And access requires an informed, engaged, and empowered community.

Priorities for the Future

Find More Alphas

Build a More Connected Patient Journey

Expand detection through AlphaDetect, healthcare systems, family testing, and technology so more people move from unanswered symptoms to diagnosis, education and informed care earlier in their journey.

OUR VISION

Make Alpha-1 harder to miss.

Create an Alpha-1 Patient Roadmap that connects people to trusted information, community, expertise and support throughout their Alpha-1 experience, making it easier for patients and families to find the right resource at the right time.

OUR VISION

No patient should have to navigate Alpha-1 alone.

Alpha-1 Foundation 2026 Programs Report

Strengthen Informed Care

Prepare for the Treatment Revolution

Build the Resources and Voice to Sustain Progress

Strengthen the Alpha-1 Research Registry and A1F Therapeutic Development Network, support clinical trials, engage emerging therapy companies and prepare for regulatory and payer conversations so the community is ready to move promising science toward meaningful patient access.

Expand philanthropy, awareness, advocacy, patient leadership and global engagement, so A1F has the resources, relationships and influence needed to sustain progress across the full Alpha-1 ecosystem.

Continue expanding the A1F Clinical Resource Center network, education, mentorship, multidisciplinary care and access, so more providers know how to recognize Alpha-1, and more patients have a clear path to informed care.

OUR VISION

Every Alpha should have a path to informed care.

OUR VISION

Build the bridge from discovery to treatment.

Transforming the Alpha-1 Journey. Advancing the Future.

OUR VISION

Make sure the Alpha-1 community has the resources and influence to shape its future. 65

EVERYTHING IS CONNECTED The Alpha-1 Foundation connects the ecosystem.

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HELP BUILD WHAT COMES NEXT Your support makes it possible to: Find more Alphas. Support more patients. Educate more providers.

Accelerate more research. Prepare for emerging treatments. Amplify the Alpha-1 voice. and ultimately, move closer to a cure.

Give today by scanning the QR code or by visiting: alpha1.org/ways-to-donate

Alpha-1 Foundation 2026 Programs Report

THE FUTURE IS POSSIBLE BECAUSE OF YOU Progress does not happen because of one program, one discovery, or one organization. It happens when patients, families, clinicians, researchers, donors, volunteers, partners, and advocates choose to move in the same direction and invest in a shared future. It happens because a community chooses to believe that better is possible and invests in making it real through the resources, relationships, and sustained commitment needed to change the Alpha-1 journey. Because of you, more people are being found earlier, before years of unanswered symptoms become years of missed opportunity. More patients and families are finding answers, trusted information, knowledgeable guidance, and a community that understands them. More healthcare providers are becoming informed, more equipped to recognize Alpha-1 and better connected to the clinical expertise and resources that can improve patient care. More researchers are pursuing new possibilities, supported by patient participation, shared data, scientific collaboration, and the infrastructure needed to move discovery forward. More emerging therapies are entering the conversation, creating new reasons to prepare patients, providers, regulators, payors and partners for the treatment landscape ahead. And the Alpha-1 voice is being heard by the people and institutions capable of changing the future, from policymakers and regulators to healthcare leaders, industry partners and the broader public. But this is only the beginning. The progress made this last year creates a stronger platform for the work ahead, but the next chapter will require continued urgency, sustained investment, and a shared commitment to reach more people. It will also require continued investment, bold ideas and a community willing to move forward together, so every Alpha has a clearer path to diagnosis, informed care, support, research participation and future treatment access. Together, we can transform the Alpha-1 journey and change what is possible for every Alpha. Transforming the Alpha-1 Journey. Advancing the Future.

WHERE WE GO NEXT, WE GO TOGETHER. Transforming the Alpha-1 Journey. Advancing the Future.

The Alpha-1 Foundation (A1F) is committed to finding a cure for Alpha-1 Antitrypsin Deficiency (Alpha-1) and to improving the lives of people affected by Alpha-1 worldwide.

ALPHA1.ORG 1 (877) 2 CURE A1 | 1 (877) 228-7321 3300 Ponce de Leon Blvd Coral Gables, FL 33134