Advancing Care in Alpha-1: Lung and Liver Connection

A Global Project by GAAPP

What Is Alpha-1?

Alpha-1 Antitrypsin Deficiency is a genetic condition that can cause problems with both the lungs and the liver. It happens when the body doesn’t make enough of a protein called Alpha-1 antitrypsin (AAT or Alpha-1), which helps protect lung tissue and keeps the liver healthy.

• The lungs can be damaged by pollution, smoking or other irritants. This can lead to breathing conditions like emphysema or COPD.

• The liver can be harmed when abnormal AAT protein builds up inside liver cells. Over time, this can lead to cirrhosis or other liver problems.

• People with two abnormal genes (like ZZ) usually have the most serious form.

• People with one normal and one abnormal gene (like MZ or MS) are often called carriers. Carriers may have lower levels of AAT and a smaller risk for lung or liver problems, especially if they smoke or are exposed to indoor or outdoor air pollution.

Many people with Alpha-1 don’t know they have it. That’s why awareness, testing, and access to care are so important.

Below is a simple chart showing MM (Normal), MZ (Carrier), ZZ (Deficient), and SZ (Partially Deficient) phenotypes with their protein levels and risk levels.

Type	What It Means	Protein Level	Risk
MM	Normal	Normal	None
MZ	Carrier	A little low	Smaller
ZZ	Deficient	Very low	High
SZ	Partially deficient	Low	Medium
Null	You may have some risk, depending on your health and lifestyle.	You may have some risk, depending on your health and lifestyle.	You may have some risk, depending on your health and lifestyle.

About the Lung & Liver Connection

In Alpha-1, two main organs are usually affected: the lungs and the liver. But for a long time, many groups—like patient organizations, doctors, researchers, and companies—have focused on just one or the other. That means people often get support for their lung symptoms or their liver symptoms, but not both.

This one-organ approach doesn’t reflect what many individuals actually live with. Some people have problems in both organs at the same time, and they need care that looks at the full picture.

GAAPP is working to change that. We’re helping build stronger connections between lung and liver communities, so that everyone—patients, families, and professionals—can work together with a more complete understanding of Alpha-1.

The Lung & Liver Connection is a global initiative led by GAAPP to bring together patients, advocates, and experts who care about Alpha-1. The goal is to connect lung and liver care and create a stronger support for people living with Alpha-1 all around the world.

This project includes:

Workshops & Events

Online and in-person meetings where people share ideas, find ways to improve care, and make plans for change.

Mentorship Pairings

A growing network that connects experienced leaders with new voices in Alpha-1 advocacy

Shared Tools

Easy-to-use tools and resources that can be adapted for different languages, regions, and audiences

Global Collaboration

A space for organizations to work together across borders and specialties

The Alpha-1 Lung Liver Alliance

The Alpha-1 Lung Liver Alliance brings together global experts, advocates, and organizations to improve awareness, diagnosis, and care. In 2026, we continue this work through in-person collaboration, policy development, and shared action across the community.

Our 2026 Work Program

In 2026, the Alpha-1 Lung Liver Alliance will build on its foundation by focusing on collaboration, policy, and shared action to improve outcomes for people living with Alpha-1 antitrypsin deficiency.

Key priorities include:

In-person Alliance meetings aligned with major global congresses to strengthen collaboration and maintain momentum
Development of a global policy statement to elevate the importance of integrated lung and liver care in Alpha-1
Continued engagement with patient organizations, clinicians, and advocates to ensure diverse perspectives shape our work
Expansion of awareness and education efforts to support earlier diagnosis and improved care pathways

These efforts reflect our shared commitment to advancing recognition of Alpha-1 and improving care across both lung and liver health.

Who It’s For

Whether you’re newly diagnosed, a long-time advocate, a healthcare provider, or part of a patient organization, the Alpha-1 Lung Liver Alliance is here for you. We welcome: