What the HHT?
A blog for the HHT community
Carol’s Story: A Life Made Visible
For decades, Carol had to advocate for herself through severe bleeding, anemia, transfusions, and medical uncertainty. Today, expert HHT care has helped give her life back — and she is sharing her story so more patients can be seen, believed, and treated sooner.
Read MoreBrain MRI Screening in HHT: Why Support Matters Before and After Results
Cure HHT authors a new response to research on brain MRI screening in HHT and highlights an important truth: screening remains clinically important, but patients need clearer communication and better emotional support throughout the process. Brain MRI Screening in HHT: Screening Still Matters — Support Must Improve A recent paper by Kofoed et al., “When…
Read MoreUniversity Hospitals of Leuven Achieves Cure HHT Center of Excellence Designation
Newly recognized international treatment center expands access to expert, coordinated care for people living with HHT MONKTON, MD—Cure HHT is proud to announce that University Hospitals of Leuven has been officially recognized as an HHT Center of Excellence, expanding access to expert, coordinated care for people living with hereditary hemorrhagic telangiectasia (HHT). This designation recognizes…
Read MoreThe Research Ripple Effect
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 MoreNew 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…
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