The Research Ripple Effect
For many people living with hereditary hemorrhagic telangiectasia (HHT), research can feel distant. It lives in conference halls, journal pages, grant proposals, and scientific jargon that does not always sound like daily life. Patients live in a different vocabulary: nosebleeds that interrupt dinner, iron infusions squeezed between work meetings, unexplained fatigue, the anxiety of screening for AVMs, the quiet calculations families make about whether a symptom is “normal for us” or something more dangerous.
But in HHT, the distance between lived experience and scientific progress is not as wide, or far off, as it seems. In fact, one of the most powerful truths in this field is that patient experience is not just adjacent to research. It is the raw material for it.
That is the research ripple effect.
What is HHT
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.
What We’ve Accomplished
Since our inception in 1991, we’ve worked tirelessly to raise awareness, improve treatments, and increase patient access to life-saving care.
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.
28 seed grants
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.
HHT News You Can Use
Receive updates direct to your inbox.
If you have previously unsubscribed from receiving our emails and would like to be re-added, click here.