Latest News

Announcements, Blog Posts, News Articles

Let’s Play! Virtual Trivia

March 9, 2021

Calling all Masters of Random Facts, Extraordinary Guessers, Jeopardy Aficionados and Trivial Pursuit Junkies— this is the event for you! Join Cure HHT and Charm City Trivia on Thursday, March…

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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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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 on the TODAY Show: “Mommy I love you. My head hurts.”

November 9, 2021

Alexis was diagnosed with HHT at the age of 2 1/2 and underwent routine screenings at her local HHT…

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WFMZ-TV 69 News reports on HHT-HTC Openings

August 11, 2021

There’s nothing we relish more than seeing news coverage about HHT. We were so excited to have WFMZ-TV Channel…

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Meta: Accelerating Research on Rare Diseases

April 6, 2021

March 19, 2021 | Meta | By Jennifer L. Minnick “At a recent workshop about Meta, Executive Director of…

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Women in Science Day 2021 – International

February 12, 2021

“HHT Ireland reminds us that women and girls play a critical role in science and technology communities and that…

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HHT Billboard

HHT Awareness in a BIG Way!

July 6, 2020

This June Awareness Month, Cure HHT was able to spread awareness in a huge way with a 24-foot-wide billboard!…

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New HHT Center Gives Hope to Father and Son with Rare Genetic Disease

June 21, 2020

May 19, 2020 | Michigan Health | by Rene Wisely: “Nose bleeds are a less frequent tradition in the…

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Pournaras - Peterbourough Examiner

Canada Girl’s Rare Disease Inspires Her to Co-Author Book

June 1, 2020

May 31, 2020 | The Peterbourough Examiner | By Omar Mosleh:   “Most kids in the hospital spend their time…

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Stanford News Center: Patient Spotlight – Jennifer Cook and Nina Murphy-Cook

March 11, 2020

March 9, 2020 | Stanford Medicine |by Tracie White  – “Jennifer Cook has dealt with migraine headaches and nosebleeds…

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