Let’s Play! Virtual Trivia
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…
Read MoreTalk Circle: Living With HHT Virtual Book Club Event
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…
Read MorePATH – Now Recruiting!
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…
Read MoreCure HHT Research Network: Clinician and Scientist Surveys
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,…
Read MoreA 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…
Read MoreBeta 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…
Read MoreMeta: Accelerating Research on Rare Diseases
March 19, 2021 | Meta | By Jennifer L. Minnick “At a recent workshop about Meta, Executive Director of…
Read MoreWomen in Science Day 2021 – International
“HHT Ireland reminds us that women and girls play a critical role in science and technology communities and that…
Read MoreHHT Awareness in a BIG Way!
This June Awareness Month, Cure HHT was able to spread awareness in a huge way with a 24-foot-wide billboard!…
Read MoreNew HHT Center Gives Hope to Father and Son with Rare Genetic Disease
May 19, 2020 | Michigan Health | by Rene Wisely: “Nose bleeds are a less frequent tradition in the…
Read MoreCanada Girl’s Rare Disease Inspires Her to Co-Author Book
May 31, 2020 | The Peterbourough Examiner | By Omar Mosleh: “Most kids in the hospital spend their time…
Read MoreStanford News Center: Patient Spotlight – Jennifer Cook and Nina Murphy-Cook
March 9, 2020 | Stanford Medicine |by Tracie White – “Jennifer Cook has dealt with migraine headaches and nosebleeds…
Read MoreHHT in the News: “World Rare Diseases Day: Three people on how their unusual conditions affect their lives” (Article 3)
February 27, 20202 | Irish Times | by Sylvia Thompson – “Michael MacGinty from Letterkenny, Co Donegal, says that…
Read MoreHHT in the News: “I have the same rare disease that killed my brother”
February 24 2020 | Independent.ie “As Rare Disease Day falls this Saturday, Katie Woods tells her story of living…
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