What the HHT?
A blog for the HHT community
Cure HHT Announcements
Talk Circle: Living With HHT Virtual Book Club Event
Talk Circle: Living With HHT Virtual Book Club Event Wed., February 24th | 7:00 p.m. (EST) (Final Night of the Winter Series) It’s the three year anniversary of the publication of Living with HHT – Understanding and Managing Your Hereditary Hemorrhagic Telangiectasia and we are celebrating with a modern twist on a traditional book club! Join…
Read MoreCure HHT Research Network: Clinician and Scientist Surveys
The Cure HHT Research Network has put together surveys for our medical and basic science communities that will help us to identify research priorities in HHT. Launched in early 2020, the Cure HHT Research Network (CHRN) aims to bring safe, effective treatments to patients more quickly by prioritizing research based on patient needs, broadening and…
Read MoreA WIN on Capitol Hill for HHT!
You may recall that back in November 2020, Cure HHT reached out for help to urge the Senate to correct an oversight related to the Department of Defense’s (DoD) Peer Reviewed Medical Research Program (PRMRP) and add “vascular malformations” back among the conditions eligible for study – a designation that has advanced HHT research since 2015. Our…
Read MoreBeta Testers Needed for AnemoCheck Mobile App
Cure HHT and Sanguina have been working together to beta test a new smart phone app that will allow users to check their hemoglobin anytime with their smartphone. We previously invited you to complete a survey to determine your eligibility to participate in the beta testing for the app. Phase 1 of the beta testing…
Read MoreNEW Research Surveys Available!
The Cure HHT Research Network (“CHRN”) is an HHT patient-led research network that encourages the sharing of ideas among patients, scientists, and physicians. The CHRN aims to bring safe, effective treatments to patients more quickly by prioritizing research based on patient needs, broadening the HHT scientific community, and encouraging global collaboration. Your participation in invaluable!
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