What the HHT?

A blog for the HHT community

Front Page Announcements

Nuts and Bolts of a Clinical Trial – PATH-HHT Study (Recorded)

Nuts and Bolts of a Clinical Trial PATH-HHT Study Dr. Vivek Iyer, Director of the HHT Center of Excellence at Mayo Clinic and local site Principal Investigator for PATH-HHT Study, and Dr. Keith McCrae, Principal Investigator overseeing the PATH-HHT Study at the Cleveland Clinic HHT Center of Excellence introduce the audience to clinical trials, including…

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Meta: Accelerating Research on Rare Diseases

March 19, 2021 | Meta | By Jennifer L. Minnick “At a recent workshop about Meta, Executive Director of Cure HHT Marianne Clancy noticed a new scientific paper about the rare disease she’s focused on curing — in the form of a case report from Sudan. Hereditary Hemorrhagic Telangiectasia, or HHT, is a genetic disorder that causes…

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Friends Virtual Trivia

Do the names Monica, Chandler, Ross, Rachel, Joey and Phoebe ring a bell? Then don’t miss Charm City’s “Friends” themed Trivia Night. Charm City is hosting their weekly Sunday Trivia Night for charity on April 11th, 2021 @ 8:00 pm (EDT) to benefit Cure HHT. Tickets are $15.00 and a portion of all proceeds will…

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Lift Your Heart for HHT Celebration Kickoff!

Help our rare disease mascot flight! February is Rare Disease Month and we want to SHOW OUR STRIPES in a big way! During our Lift Your Heart for HHT tribute celebration from February 22 through February 28 (Rare Disease Day®), for each donation made, we’ll honor your loved ones who are either affected by HHT…

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Women in Science Day 2021 – International

“HHT Ireland reminds us that women and girls play a critical role in science and technology communities and that their participation should be strengthened.” HHT Ireland talks to Petronella McLoughlin, an HHT patient who is a Senior Finite Scheduler with MSD Biotech, Dublin. McLoughlin notes: “It is exciting to be among those who influence therapeutical…

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