What the HHT?
A blog for the HHT community
Cure HHT Announcements
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 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 MoreFB Live Event: Dr. Scott Olitsky – Are Clinical Trials Right for Me?
Join Cure HHT Chief Medical Officer, Scott Olitsky, MD for a Facebook live event as he discuss the components of a typical clinical trial, why they are necessary, and how they can lead to approved therapies. For many years there were few treatments for HHT and those that were available tended to address the problems…
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…
Read MoreHHT Rare! Grab Your Swag
Pick up your HHT RARE swag today during Rare Disease Awareness Month in our online store, and start spreading HHT awareness while benefiting an amazing cause!
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