The cornerstone of the HHT community
We are building a future where HHT is found sooner, treated better, and ultimately cured.
Cure HHT brings patients, families, clinicians, researchers, and partners together around one shared goal: changing what is possible for people with HHT. For more than 35 years, that work has helped build expert care, stronger clinical guidance, a growing research community, and new paths toward treatment. Today, we are closer to better answers than we have ever been—and we are building what comes next.
Why this matters
1 in 4,000
people are affected by HHT
2M+
people live with HHT worldwide
80%
of people with HHT are undiagnosed
55+
HHT Centers of Excellence worldwide
Start with what you need today
Wherever you are with HHT, we have a place for you
HHT touches patients, families, caregivers, and clinicians differently. Pick your path and we will point you to what matters most.
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I’m newly diagnosed
A diagnosis is a starting point. Find out what to screen for, how to build a care plan, and what your family may need to know.
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I need HHT care
HHT Centers of Excellence bring specialists together around the same patient. Find a Center, or an HHT-experienced physician near you.
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I’m a healthcare professional
HHT surfaces across specialties. Get guideline-based screening and management guidance, clinical tools, and referral pathways.
Understand HHT
HHT is more than nosebleeds. It’s a whole-body disease.
Hereditary hemorrhagic telangiectasia (HHT), also known as Osler-Weber-Rendu syndrome, is a genetic disorder that causes malformed blood vessels in multiple organs. It often begins with nosebleeds in childhood, but some of its most serious complications can exist without obvious symptoms.
Learning how HHT can affect you—and what can be screened for, monitored, and treated—is an important part of living well with the disease.
Research in motion
15
Treatments in the HHT pipeline today
3
Treatments in the pipeline between 2018 and 2022
55+
HHT Centers of Excellence worldwide
35+ yrs
Serving the HHT community since 1991
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Our stories are what move us from an asterisk in a medical textbook to a community worth as much attention as any cancer or other disease.
Terry, HHT patient and caretaker
Stay close to the cure
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