Accelerating Answers. Informing Decisions.
Have you been wondering if you or your family should be tested for Alpha-1 Antitrypsin Deficiency (Alpha-1)? AlphaDetect accelerates answers, informs decisions, and provides the first point of entry into the Alpha-1 Community of support.
What is Alpha-1?
Alpha-1 is an inherited condition that can lead to serious lung and liver disease. Despite decades of progress, over 90% of individuals with Alpha-1 remain undiagnosed. That means thousands of people are living with symptoms, without answers — and missing the chance for early intervention that could change their lives.
Who should be tested for Alpha-1?
The latest clinical guidelines recommend Alpha-1 testing for:
- Parents, siblings, children, and extended family members of people diagnosed with Alpha-1
- People with COPD (chronic obstructive pulmonary disease), a group of lung diseases, including emphysema, that block airflow and make it difficult to breathe
- People with unexplained chronic liver disease
- People with panniculitis, a skin condition that some people with Alpha-1 develop
What is AlphaDetect?
AlphaDetect has been established to lead a transformative approach to uncover those with Alpha-1. Unprecedented in rare disease detection, AlphaDetect, powered by the Alpha-1 Foundation, will unify community stakeholders – healthcare providers, patients, advocates, and industry partners – with a collective common purpose: to ensure no alpha-1 patient is left undetected.
AlphaDetect will:
- Standardize and integrate Alpha-1 screening into both lung and liver care
- Empower individuals to seek answers and get tested
- Offer free genetic testing processed at our dedicated AlphaDetect lab, with no cost to patients or insurance
- Support patients and providers with a dedicated customer care team and an on-call physician for detection questions
AlphaDetect Updates
Over the next year, A1F will continue to raise awareness for Alpha-1 detection through education, forums, and initiatives, while building toward a mid-2026 launch of AlphaDetect’s dedicated lab and test kits. Until then, current testing and support options will remain in place:
“Although past detection efforts have made progress, they have not meaningfully changed the trajectory of AATD detection. The stubbornly persistent under-detection of Alpha-1 over the past 30 years underscores the urgent need for a more effective and sustainable approach.”
Dr. James Stoller
“As an Alpha-1 patient, having a cure at the time I was diagnosed would not have changed my outcome. I still would have had only 29% lung function and been unable to walk up a flight of stairs. The most underserved alphas are the ones who don’t know they have the disease.”
Jon Hagstrom
“A more uniform and consistent approach is essential, and I’m thrilled to see the Alpha-1 community uniting around centralized detection. Only through collaboration and innovation can we achieve the breakthrough in early detection that’s been needed for far too long.”
Dr. Mark Brantly
“Alphas are hidden in plain sight. You have our commitment to accelerate and strengthen Alpha-1 detection through a unified and transformative approach. Please continue to share your thoughts and ideas, we are stronger together. Each of us has a role in helping an Alpha find their answer and take their first step into this incredible community of support.”
Julie Murray
“For too long, those fighting for Alpha-1 detection have worked in isolation. Now, for the first time, we’re uniting around a common goal. The energy is real—and if we can channel it through AlphaDetect, we can transform the future for alphas, and maybe all rare diseases.”
Danielle Holm
“My focus is to activate the full strength of the A1F Clinical Resource Center (CRC) network and its institutions to transform Alpha-1 detection. This is not just a clinical challenge — it’s a community imperative. By aligning CRCs with national platforms like Epic, we’re building a purpose-driven ecosystem where collaboration drives earlier diagnoses, stronger connections, and lasting impact.”
Larry Hinson
AlphaDetect, founded in 2025, is committed to uncovering anyone with Alpha-1 Antitrypsin Deficiency. Located in Durham, NC, AlphaDetect will operate as a limited liability company and a non-profit subsidiary of A1F, holding tax-exempt status under Section 501(c)3 of the Internal Revenue Code.
The Alpha-1 Foundation, founded in 1995, is committed to finding a cure for Alpha-1 Antitrypsin Deficiency (Alpha-1) and to improving the lives of people affected by the condition worldwide. A1F has invested over $100 million to support Alpha-1 research and programs at 130 institutions in North America, Europe, the Middle East and Australia.
