What the HHT?
A blog for the HHT community
Front Page Announcements
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…
Read MoreFriends 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…
Read MoreLift 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…
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 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…
Read MoreRare Disease Month
The month of February is all about feeling the love and here at Cure HHT we’re embracing all the love as we highlight our very special HHT Community during Rare Disease Month. February was officially declared Rare Disease Month in 2008 with February having the “rarest” number of days. Thirteen years later, we continue to be rare but stronger…
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