What the HHT?
A blog for the HHT community
News
Business Insider: 39-year-old mother of three in the UK, suffered from daily nosebleeds
March 9, 2022 | Business Insider | By Lauren Crosby. After a lifetime of constant nosebleeds, a woman found out she had a rare genetic disease – “Kate James, a 39-year-old mother of three in the UK, suffered from daily nosebleeds throughout most of her life until she was given a diagnosis she never expected.…
Read MoreHHT on the TODAY Show: “Mommy I love you. My head hurts.”
Alexis was diagnosed with HHT at the age of 2 1/2 and underwent routine screenings at her local HHT Center of Excellence. Her life changed in an instant when she was rushed to the emergency room. The last thing she said to her mother before her life completely changed was, “Mommy I love you. My…
Read MoreWFMZ-TV 69 News reports on HHT-HTC Openings
There’s nothing we relish more than seeing news coverage about HHT. We were so excited to have WFMZ-TV Channel 69 report on our two newest HHT-HTC Treatment Centers that opened in Indiana and Michigan! Not only did the reporting share the good news about access to care but gave an overview of HHT and its…
Read MoreMeta: 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 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…
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