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…

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NEW Webinar: Nuts and Bolts of a Clinical Trial – PATH-HHT Study

Nuts and Bolts of a Clinical Trial PATH-HHT Study Wed., May 12th | 6:00 p.m. (ET)   This discussion will introduce the audience to clinical trials, including the factors that are considered when a clinical trial is designed, the different types of clinical trials, and the importance of clinical trials in developing new treatments for…

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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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Rare 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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NEW Feature – Nosebleed Tracking with Backpack Health

Backpack Health has recently introduced a new nosebleed tracker function to its online website portal as well as its smartphone app (available on the iOS and Android systems). The new tracker allows you to input a nosebleed diary to help follow the course of your nosebleeds, which can be helpful in documenting severity as well…

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