What the HHT?
A blog for the HHT community
Posts by Valaree Machen
CHRN: 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 MoreHHT Frontlines: Spring 2022 Flipbook
Support HHT Centers of Excellence through HRSA!
We made it through the House, but now we need final Senate support! Thanks to your recent advocacy, in July 2021 the U.S. House of Representatives approved legislation that included $2 million in funding that would go directly to a new “National HHT Diagnosis and Treatment Initiative,” providing funds to our existing CoEs to expand staffing and…
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