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Marching our way to a cure

We are the cornerstone of the HHT community – fighting for a brighter future for those with HHT through awareness, education, and research.

HHT affects more than 1.4 million people worldwide and is the 2nd most common genetic bleeding disorder in the U.S. But it is still often misdiagnosed and misunderstood.

Since our inception in 1991, we’ve worked tirelessly to raise awareness, improve treatments, and increase patient access to life-saving care.

Research is the key to our future – we fund and drive scientific research to better the lives of HHT patients everywhere.

By joining our community, you ensure you’re the first to know about the latest HHT news, research, advancements and more.

Impact by the numbers.

We drive science forward through government advocacy, seed grants, and other means. Turning your donations into millions of dollars dedicated to funding new treatments, technology, and drugs.

$m
invested in
28 seed grants
$m
in leveraged investment
%
return on investment

Hereditary Hemorrhagic Telangiectasia (HHT), also known as Osler-Weber-Rendu Syndrome, is an inherited disease that leads to malformed blood vessels in multiple organs of the body and typically begins with nosebleeds during childhood. HHT can result in serious health problems if not promptly diagnosed and treated. Our mission is to find a cure for HHT while saving the lives and improving the well-being of individuals and families affected by HHT.

1 in
Hereditary Hemorrhagic Telangiectasia (HHT) is a genetic disorder of the blood vessels that affects approximately 1 in 5,000 people worldwide.
%
of people with HHT are undiagnosed
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