Finding a cure for Alpha-1 and improving the lives of those affected

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OUR IMPACT

We’ve invested over $100 million into Alpha‑1 research and related programs

From funding breakthrough research to hosting programs and events that keep our community strong and healthy until we find a cure, no other organization does more for families with Alpha‑1.

$100M

in research funded

130

researchers funded

10X

the clinical trials within a decade

TOP STORIES

Sharing Her Rare Disease Story: Betrice Coleman-Sweet

As the annual Rare Disease Day approaches, we reflect on the stories that often go untold, particularly those surrounding rare […]

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February 5, 2025
A1F Raises Alpha-1 Awareness Throughout February for Rare Disease Day

Rare Disease Day takes place on the last day of February each year. The goal of this day is to […]

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February 3, 2025
The Alpha-1 Foundation Commemorates its 30th Anniversary

The Alpha-1 Foundation (A1F) is proud to commemorate its 30th anniversary of supporting patients with Alpha-1 Antitrypsin Deficiency (Alpha-1) while […]

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January 31, 2025
December 2024 PubMed Articles

The Alpha-1 Foundation is proud to provide a monthly list of articles from researchers that have been funded by the […]

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January 13, 2025
Create and Keep a Medication List for Your Health

Many people of all ages take medications. Keeping track of when, how and why you use medications is important for […]

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January 8, 2025
November 2024 PubMed Articles

The Alpha-1 Foundation is proud to provide a monthly list of articles from researchers that have been funded by the […]

Read More… from November 2024 PubMed Articles

December 20, 2024
Virginia Clark, MD: Understanding Fazirsiran’s Potential in AATD Liver Disease

Watch her video interview here. New data from the open-label extension of the phase 2b SEQUOIA study of fazirsiran support […]

Read More… from Virginia Clark, MD: Understanding Fazirsiran’s Potential in AATD Liver Disease

December 20, 2024
Alpha-1 Foundation signs-on to letter on Utilization Management in Medicare Part D

Full letter below: Dear Ms. Duran:  We are writing to underscore the importance of the Centers for Medicare & Medicaid […]

Read More… from Alpha-1 Foundation signs-on to letter on Utilization Management in Medicare Part D

December 12, 2024
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SPOTLIGHT

Raising Alpha-1 Awareness for Rare Disease Day

“As an African American, I didn’t even know that this disease could affect people like me,” says Betrice Coleman-Sweet. “There’s a huge lack of awareness in our community, and I want to change that. Alpha-1 isn’t just a disease for people of European descent; it affects people of all backgrounds.”

Her message for Rare Disease Day is clear: Don’t suffer in silence. “If you have a rare disease, don’t let it isolate you. Find your voice. Find your community. You are not alone,” she urges. “This is a fight, but it’s one we can face together.”

Learn More About Rare Disease Day

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