Latest News

Announcements, Blog Posts, News Articles

30th Anniversary Celebration

June 2, 2021

Cure HHT’s 30th Anniversary kick-off is a virtual celebration was a huge success, with with presenters reflecting on the tremendous influence of the organization’s vision and future endeavors to find,…

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Strides for Strength: Virtual Walk

May 19, 2021

Our 2nd Annual Global Walk for a Cure—Strides for Strength—is back for another exciting year and we are doing things BIGGER and BETTER than before! Grab your walking shoes, round…

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RARE GENOMES PROJECT: Genome Sequencing for Rare Disease

May 19, 2021

The Rare Genomes Project is a patient-driven research project through the Broad Institute that performs full genome sequencing on families with suspected rare disease who do not have a genetic…

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PATH_Logo

PATH – Now Recruiting!

April 27, 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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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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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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MacGinty, Michael - Irish Times

HHT in the News: “World Rare Diseases Day: Three people on how their unusual conditions affect their lives” (Article 3)

February 28, 2020

February 27, 20202 | Irish Times | by Sylvia Thompson – “Michael MacGinty from Letterkenny, Co Donegal, says that…

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