What the HHT?
A blog for the HHT community
Cure HHT Announcements
2024 National HHT Patient & Physician Conference
Join us for the first National Patient & Physician Conference on the east coast in some time – patients and healthcare professionals alike won’t want to miss this opportunity!
We will we bring together the experts from 3 of our top centers – University of Pennsylvania/Children’s Hospital of Philadelphia, Johns Hopkins University and New York Presbyterian/Columbia University. Registration opens soon! Learn more >>
Read MoreHelp save lives this Giving Tuesday
Establishing new Centers of Excellence is essential to providing life-saving, expert HHT care to patients across the globe – including our littlest of patients like Jahier, Liam and Willie.
One of the many ways your donations will be put to use this Giving Tuesday is by helping to expand our pediatric reach – to certify more HHT Centers of Excellence with pediatric specialists – and grow the number of physicians educated about HHT. This is especially important for pediatric patients, where HHT can be more difficult to diagnose as symptoms do not often manifest until later in life. Early screening and expert treatment is vital to preventing complications and avoiding unneeded suffering and loss.
Read MoreSuffer from brain AVMs? You can help further HHT research today
Cure HHT, along with HHT Centers of Excellence across North America, are now actively recruiting HHT patients worldwide to participate in the NIH funded study, entitled “Cerebral Hemorrhage Risk in Hereditary Hemorrhagic Telangiectasia (HHT)”. The goal of this research is to determine what genetic and clinical factors signal high risk for hemorrhage from brain AVMs.…
Read MorePAZ Clinical Trial Now Recruiting
HHT Centers of Excellences across the U.S. are now enrolling patients to participate in the new randomized clinical trial to assess the effectiveness of Pazopanib in reducing the severity of nose bleeds in adults with HHT.
To learn more about the trial and to understand if participation may be right for you, please visit the clinical trials section of our website.
By participating in clinical research, you can play a role in helping the development of new treatments and therapeutics – which have the potential to lead to a higher quality of life for generations of HHT patients.
Read MoreA major milestone for HHT treatment!
I am reaching out to share the news of a truly momentous milestone for both our organization and our community; the Pazopanib clinical trial has officially launched!
This means Cure HHT is now one of the few patient advocacy organizations in the world that is directly sponsoring a Phase II/III clinical trial of an investigational drug product that we own. I wanted to explain what this means, reflect on how we reached this point, and share why this is so monumental!
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