What the HHT?
A blog for the HHT community
Front Page Announcements
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…
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…
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 Medical Research Program (PRMRP) and add “vascular malformations” back among the conditions eligible for study – a designation that has advanced HHT research since 2015. Our…
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 invited you to complete a survey to determine your eligibility to participate in the beta testing for the app. Phase 1 of the beta testing…
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