What the HHT?
A blog for the HHT community
Front Page Announcements
13th Annual Stoner Open
13th Annual Stoner Open July 8, 2022 | 1:30 p.m. (EST) Farmstead Golf & Country Club Spend the day on the green to support Cure HHT! Join Steve Stoner and friends at the Farmstead Golf & Country Club in Lafayette, NJ for the 13th year in a row to support an important cause. Let’s make…
Read MoreFederal Funding Secured for U.S. Centers of Excellence
A message from Cure HHT Executive Director, Marianne Clancy It is with tearful joyfulness that I share this truly momentous news with you: Our HHT Center of Excellence (CoE) funding request made it into the final spending bill, and that bill was signed into law by President Biden just a few weeks ago. At long…
Read MoreCure 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.…
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