What the HHT?
A blog for the HHT community
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 More
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 More
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 More
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!Read More
There is always excitement associated with the publication of one of our important research studies as it provides significant information for patients and their providers in managing care. This study, recently published in Vascular Medicine, focuses on screening practices for pulmonary (PAVMs) and vascular malformations (VMs). Cure HHT is able to provide FREE access to…Read More