What the HHT?

A blog for the HHT community

Front Page Announcements

Rare Disease Month

The month of February is all about feeling the love and here at Cure HHT we’re embracing all the love as we highlight our very special HHT Community during Rare Disease Month. February was officially declared Rare Disease Month in 2008 with February having the “rarest” number of days. Thirteen years later, we continue to be rare but stronger…

Read More

A 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 More

Beta 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 More

North American Standard of Care for the Screening of Brain & Lung VMs

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

Virtual Meet-Up: HHT & COVID – 1 Year Later (Recorded)

Sat., January 16th 12:00 p.m. (EST) Don’t miss this rare opportunity to receive factual information surrounding COVID-19 and HHT from leading experts who have been on the frontlines since the very beginning of the COVID-19 pandemic. This interdisciplinary group of experts from across our HHT North American Centers of Excellence will discuss the multiple aspects…

Read More