A rare diagnosis can feel isolating. You do not have to navigate HHT alone.
Whether HHT is new to you or has been part of your family for generations, knowing what comes next can change what happens next. There is a lot to understand, but you do not have to figure it out all at once—or by yourself.
Find your starting point
Wherever you are in this, there is a next step
Some people arrive here the week they were diagnosed. Others have known for thirty years and are looking for something specific. Pick the door that matches today.
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Newly diagnosed
Six steps in the order they usually matter, starting with the screening that is most time-sensitive.
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Understand HHT
What the disease is, how it shows up across six organ systems, and how it moves through families.
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Diagnosis and screening
The Curaçao Criteria, genetic testing, and what screening is actually looking for.
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Care and treatment
Nosebleeds, iron and anemia, lung and brain malformations, and what the stepped approach looks like.
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Find HHT care
More than 55 Centers of Excellence worldwide, plus a directory of HHT-experienced clinicians.
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Resources and connection
Guides, checklists, webinars, conferences, and the people who already understand the parts that are hard to explain.
Why this matters now
Most people with HHT still do not know they have it
HHT affects about one in 4,000 people, and roughly 80% of them are undiagnosed. The average wait between first symptoms and a diagnosis is 27 years. That is a long time to be told that heavy nosebleeds run in the family and leave it there.
If you are reading this because someone in your family was recently diagnosed, that diagnosis is information for you too. Each child of a person with HHT has a 50% chance of having it, and screening can start before anything has gone wrong.
What the numbers say
1 in 4,000
People are affected by HHT
80%
Are undiagnosed
27 yrs
Average delay before diagnosis
50%
Chance each child of an affected parent inherits HHT