Latest News
Research findings, treatment developments, policy decisions, and announcements from across the hereditary hemorrhagic telangiectasia (HHT) community.
For reporters and producers
HHT affects one in 4,000 people worldwide, and roughly 80% of them do not know they have it. If you are covering the condition, we can connect you with clinicians, researchers, and families who have agreed to speak on the record.
Media inquiries
Email marcomms@curehht.org with your outlet, your deadline, and what you are working on. We respond to press requests first.
We can arrange interviews with HHT specialists at accredited Centers of Excellence, with investigators running current trials, and with community members who have consented to media contact. We can also fact-check a draft before it runs.
Press kit
Background material you can use without asking, provided the source is credited to Cure HHT.
- HHT fact sheets, complete set (PDF) — symptoms, organ involvement, diagnosis, and treatment, written for a general audience
- Diagnosis and misdiagnosis facts (PDF) — why the average patient waits 27 years for an answer
- Cure HHT logo (PNG) — please do not alter the mark or its proportions
- Resource Library — guidelines, webinars, and patient education materials
Getting the facts right
- The name. Hereditary hemorrhagic telangiectasia, lowercase, abbreviated HHT after first use. It was formerly called Osler-Weber-Rendu syndrome.
- What it is. An inherited condition in which blood vessels form abnormally, producing fragile vessels that bleed and direct artery-to-vein connections called arteriovenous malformations.
- How common. One in 4,000 people worldwide. About 80% remain undiagnosed.
- The stakes. Untreated arteriovenous malformations in the lungs and brain can cause stroke, brain abscess, and hemorrhage. Screening finds them before they do.
- What it is not. HHT is not just nosebleeds, and it is not a bleeding disorder of the blood itself. The vessels are the problem.