What the HHT?
A blog for the HHT community
New Evidence, Clearer Urgency: What the Latest HHT Study Shows
A major new study published in Blood shares early findings from CHORUS, the first national U.S. registry created to track the real-world impact of HHT. The report includes data from the first 600 participants enrolled across 15 HHT Centers of Excellence and confirms what patients and families have known for years: HHT is not just…
Read MoreNew Federal Momentum for HHT: $3M for Centers and Dedicated Research Eligibility
We are thrilled to share two major wins to celebrate today: the President has signed the FY26 funding agreement which includes $3,000,000 for HHT Treatment Centers and—huge for the research world—“Hereditary Hemorrhagic Telangiectasia (HHT)” is listed as its own eligible topic area under the Peer Reviewed Medical Research Program (PRMRP)! Next stop: the President’s signature…
Read MoreReflections from the Next Generation
HHT is often introduced to the world through a single symptom — nosebleeds. But HHT is never only one thing. It is a whole system disease, one that touches organs, families, and futures.
Read MoreInvitation: 2026 HHT Capitol Hill Day in Washington, DC
HHT is often introduced to the world through a single symptom — nosebleeds. But HHT is never only one thing. It is a whole system disease, one that touches organs, families, and futures.
Read More2025 Impact Report: A Year of Momentum, Milestones, and Measurable Progress
This year, the HHT community proved—again—that determination moves mountains. Our 2025 Impact Report highlights a year defined by scientific breakthroughs, expanded clinical access, and the relentless drive of patients, families, clinicians, and supporters who believe in a world where HHT is found early, treated effectively, and ultimately cured. From pushing new research forward to strengthening…
Read More