Category: Resource Library
Downloadable and linked resources. Posts in this category appear automatically on the Resource Library page.
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The Role of Genetics in HHT (for patients)
For people who suspect that they might have HHT, this brochure provides an overview of the signs, symptoms, and genetics of HHT and outlines…
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The Role of Genetics in HHT (for providers)
This brochure gives healthcare providers an overview of the signs, symptoms, and genetics of HHT and outlines the important role that genetic testing plays…
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The Connection Between HHT and PH
Learn more about the connection between HHT and PH, disease management, signs and symptoms and more during this recorded Facebook Live event with Dr.…
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Back to School (tips for caregivers of children with HHT)
Facebook Live event featuring Cure HHT Chief Medical Officer, Scott Olitsky, MD, and school nurse, Leslie A. Perry, RN, MS as children gear up…
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Development and performance of a hereditary hemorrhagic telangiectasia-specific quality-of-life instrument
Blood Advances. Authors: Raj S Kasthuri, Shruti Chaturvedi, Sonia Thomas, Nathan Vandergrift, Carla Bann, Nicole Schaefer, Marianne S Clancy, Reed Pyeritz, and Keith R…
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Bedside to Bench: How the HHT Community Drives Research Initiatives (Recorded)
In March 2020, Cure HHT was 1 of 30 organizations selected to participate in the Chan Zuckerberg Initiative (also known as CZI) Rare is…
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HHT International Guidelines: Brain Vascular Malformations (VMs) (Recorded)
Dr. Marie Faughnan, Director, Toronto HHT Centre of Excellence, discusses Brain Vascular Malformations (VMs) as they relate to HHT. Dr. Faughnan is a renowned…
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Physician Webinar: The Role of Liver Imaging in HHT (Recorded)
Liver involvement occurs in approximately 75% of people with HHT. While many people are asymptomatic, the complications associated with liver involvement have historically been…
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International HHT Guidelines: Diagnosis
Dr. Justin McWilliams, Co-Director, UCLA HHT Center of Excellence and Katie Wusik, Genetic Counselor for the Cincinnati Children’s Hospital HHT Center of Excellence discuss…