Category: Resource Library
Downloadable and linked resources. Posts in this category appear automatically on the Resource Library page.
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HHT Burden Infographic
The clinical and economic burden of HHT on one page, built for advocacy meetings with legislators.
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NIH Undiagnosed Diseases Program (UDP)
The National Institutes of Health (NIH) Undiagnosed Diseases Program (UDP) is part of the Undiagnosed Disease Network (UDN). The UDP was organized by the…
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Your Questions Answered: An Informative Session on an HHT Clinical Trial (Recorded)
An informative webinar about hereditary hemorrhagic telangiectasia (HHT). The webinar is being run by Cure HHT and introduces an upcoming clinical trial evaluating whether…
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Mental Health & HHT (Recorded)
Living with Hereditary Hemorrhagic Telangiectasia (HHT) presents unique physical challenges, and this webinar will address the often-overlooked impact on mental well-being. Join us for…
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Iron Replacement in HHT
Iron deficiency anemia is common in people with HHT with an estimated prevalence of 50%. Further, a number of people with HHT develop symptomatic…
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CHORUS Protocol Sheet
Protocol summary for the Comprehensive HHT Outcomes Registry of the United States.
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Policy Statement: Iron Replacement Therapy in HHT
Cure HHT’s position on iron replacement in HHT, including the safety considerations around repeated intravenous iron.
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Entering the Therapeutics Age: A New Era for HHT Treatment (Recorded)
Lately, there’s been an exciting wave of news about HHT therapies. Several clinical trials are now underway, biotech companies are investing heavily in HHT…
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A New Option for Chronic Nosebleeds: Is Sclerotherapy Right for You? (Recorded)
Join us to learn about sclerotherapy, an innovative treatment offering hope to HHT patients suffering from chronic nosebleeds. Dr. Jay Piccirillo, ENT at Washington…
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United States Map of Nasal Sclerotherapy Providers
This Map shows the current US HHT experts that perform nasal sclerotherapy as of November, 2024. This image was created by Dr. Jay Piccirillo…