Latest News

Announcements, Blog Posts, News Articles

Talk Circle: Living With HHT Virtual Book Club Event

February 9, 2021

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…

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PATH_Logo

PATH – Now Recruiting!

February 1, 2021

The PATH Study is exploring the use of an oral medication called pomalidomide for the treatment of nosebleeds in HHT at 11 research centers across the United States. Find centers…

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Cure HHT Research Network: Clinician and Scientist Surveys

January 29, 2021

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,…

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A WIN on Capitol Hill for HHT!

January 28, 2021

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…

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Beta Testers Needed for AnemoCheck Mobile App

January 28, 2021

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…

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NEW Research Surveys Available!

January 28, 2021

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…

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HHT is Rare As One!

February 4, 2020

Cure HHT has been selected as 1 of only 30 organizations out of 287 that submitted letters of interest, to…

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Cleveland – “Woman Undergoes Brain Surgery to Remove Deadly AVM, Caused by Rare Genetic Condition”

December 9, 2019

Cleveland Clinic – “Every time Lindsay Vos got a throbbing headache, or felt weakness on the left side of…

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Scruggs-Kenosha News

HHT in the News – Wisconsin

November 18, 2019

KENOSHA — For most of his life, Mark Schnuck has had nosebleeds. Some have been minor, others severe, but…

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Rainbow Rehab’s Rainbow Visions Magazine: Coming Full Circle

April 17, 2019

Much of HHT education comes from the deeply personal stories of those who are living with the disorder. This…

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Washington Post Feature: Zina Martinez Story

November 20, 2018

The Washington Post | November 17, 2018 Check out the Washington Post Health & Science section’s featured article about…

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Chair’s Corner: UNC Department of Medicine Podcast with Dr. Raj Kasthuri about HHT

June 29, 2018

Podcast Series | The Department of Medicine at the University of North Carolina Check out the transcript of a…

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Living with HHT: Review in Journal of Radiology Nursing

June 21, 2018

Book Review | Journal of Radiology Nursing June 2018: Volume 37, Issue 2, Page 137. Read the article from…

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Marianne Clancy Interview on Fox 45 News Baltimore

June 21, 2018

Fox 45 News Baltimore | June 18, 2018 Check out the news clip from the interview between Fox 45…

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