What Is HHT (Hereditary Hemorrhagic Telangiectasia)?

HHT (hereditary hemorrhagic telangiectasia), also called Osler-Weber-Rendu syndrome, is a genetic disorder that causes malformed blood vessels to form in multiple organs. It often starts with nosebleeds in childhood, but it is a whole-body disease: some of its most serious complications can develop without obvious symptoms. Because HHT can be screened for, monitored, and treated, understanding how it affects the body is a practical part of living well with the condition.

Why HHT Is More Than Nosebleeds

The most visible sign of HHT is frequent nosebleeds, which is why the condition is often associated with them. But the underlying problem — abnormal connections between arteries and veins, called telangiectasias and arteriovenous malformations (AVMs) — can occur in organs beyond the nose.

According to Cure HHT, HHT is a whole-body disease, and some of its most serious complications can exist without obvious symptoms. That gap between how HHT looks and how it behaves is the main reason screening and monitoring matter.

How Common Is HHT?

The 80% undiagnosed figure is the number to sit with. It means most people who have HHT do not yet know it — which is why recognizing the pattern of symptoms and knowing where to get evaluated matters.

What HHT Can Affect

HHT involves malformed blood vessels in multiple organs. The disease often begins with nosebleeds in childhood, but its reach extends beyond that early sign. Because complications in some organs may not produce clear symptoms, the condition is managed partly through proactive screening rather than waiting for problems to announce themselves.

Cure HHT frames the practical takeaway directly: 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.

Where to Start, Depending on Your Situation

Cure HHT organizes its guidance around where you are with HHT, since the disease touches patients, families, caregivers, and clinicians differently.

If you are newly diagnosed

A diagnosis is a starting point. The next steps are understanding what to screen for, how to build a care plan, and what your family may need to know.

If you need HHT care

HHT Centers of Excellence bring specialists together around the same patient. You can look for a Center, or an HHT-experienced physician, near you.

If you are a healthcare professional

HHT surfaces across specialties. Guideline-based screening and management guidance, clinical tools, and referral pathways are available through provider resources.

Research and Treatment Progress

HHT research is active rather than static. Cure HHT reports 15 treatments currently in the HHT pipeline, compared with 3 treatments in the pipeline between 2018 and 2022. The organization has served the HHT community since 1991 — more than 35 years.

That pipeline growth is the context behind Cure HHT's stated goal: building a future where HHT is found sooner, treated better, and ultimately cured.

Staying Connected

Cure HHT describes itself as the cornerstone of the HHT community, bringing patients, families, clinicians, researchers, and partners together around one shared goal. You can join the community to receive research breakthroughs, patient stories, and webinar invitations.

As HHT patient and caretaker Terry put it: "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."