What the HHT?
A blog for the HHT community
Front Page Announcements
Cure HHT Scientific Newsletter
Twice a year, Cure HHT collaborates with its global research and medical advisory board to publish HHT Frontlines – a scientific newsletter aimed at centralizing, summarizing, and sharing the most relevant HHT studies with the scientific and medical community. Our latest edition dropped earlier this year, and while the newsletter focuses on topics most relevant…
Read MoreCHRN: Creating a Roadmap for the Future
A Message from Marianne Clancy, Cure HHT Executive Director Transformational. That’s the word that keeps coming to mind since returning from Boston, the site of the 1st Cure HHT Research Network (CHRN) International Convening. I have been part of this foundation for nearly 30 years, and I can honestly say that this stands out as…
Read MoreBusiness 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 More1st CHRN Conference Convening
The 1st Cure HHT Research Network International Convening is just around the corner and taking place in Boston from March 18-20! Our HHT patient advocates, leading physicians and scientists from around the globe have our community’s survey data in hand. Following virtual workshop sessions, this amazing group will be working side-by-side to develop a research roadmap that prioritizes HHT…
Read MoreHelp KISS HHT goodbye!
February is Rare Disease Month and we want to SHOW OUR STRIPES in a big way! During our Kisses for a Cure tribute celebration from February 14 through February 28 (Rare Disease Day®), for each donation made (no matter the amount), we’ll honor your loved ones who are either affected by HHT (patients, caregivers and HHT supporters) or who have sadly lost their…
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