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
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.”
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