What the HHT?
A blog for the HHT community
Blog
David’s Story: The Family HHT Leaves Behind
David does not have HHT, but HHT has shaped his family for generations. Through loss, caregiving, and his sister Carol’s experience with expert care, David’s story shows why visibility matters — not only for patients, but for every family still searching for answers.
Read MoreCarol’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 MoreCure HHT Announces Historic Federal Research Designation for Hereditary Hemorrhagic Telangiectasia
New PRMRP designation creates a dedicated pathway for HHT-focused research through the Department of Defense’s Congressionally Directed Medical Research Programs MONKTON, MD. — May 19, 2026 — Cure HHT is proud to announce a historic milestone: hereditary hemorrhagic telangiectasia (HHT) has been included as its own eligible topic area in the Fiscal Year 2026 Peer…
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…
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