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. Ali Ataya…
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Nosebleed Management – Nurse Cards
This card contains helpful tips for nosebleed management in a format that is ideal for providers who may not be familiar with the care required for HHT-related…
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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 and get ready to…
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PH and HHT: Signs, Symptoms and Disease Management (Recorded)
PHA and Cure HHT – Murali M. Chakinala, M.D. discusses the importance of recognizing the signs and symptoms of Pulmonary Hypertension (PH) and Hereditary Hemorr…
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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…
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Heartland Regional Genetics Network
Heartland Regional Genetics Network ofrece materiales gratuitos en español para la comprensión de la genética y las enfermedades raras.
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HHT Frontlines – Scientific Newsletter
Spring 2022. Cure HHT’s biannual newsletter that centralizes and summarizes select and important publications about HHT for patients, clinicians, and scientists…
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A Comprehensive Guide to Managing Your HHT
We’ve taken the International HHT Guidelines and distilled them into easily readable factsheets and checklists that can be filled out and given to your physicia…
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The Rare Genomes Project
The Rare Genomes Project is a patient-driven research project through the Broad Institute that performs full genome sequencing on families with suspected rare d…
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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 One Project. This ambiti…
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Las Guías Internacionales de HHT: Epistaxis – Tratamiento Farmacológico (Grabado)
El Dr. Marcelo Serra, Director de la Unidad de HHT del Hospital Italiano de Buenos Aires brinda información sobre el tratamiento farmacológico no quirúrgico del…
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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 H…
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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 h…
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Giving hereditary haemorrhagic telangiectasia the attention it deserves
The Lancet Haematology. Author: Hanny Al-Samkari, MD. This article can be purchased directly from the publisher. Click to view the article description and purch…
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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 Excell…
MoreIron 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 iron deficienc…
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International HHT Guidelines: Epistaxis/Nosebleed Management (Recorded)
Dr. Jay Piccirillo, ENT, Washington University HHT Center of Excellence and Dr. James Gossage, Director, Augusta University HHT Center of Excellence discuss the…
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Las Guías Internacionales de HHT: Epistaxis en HHT (Grabado)
La Dra. Yesica Lijdens, Otorrinolaringóloga de la Unidad HHT Hospital Italiano de Buenos Aires, y el Dr. Federico Urquiola, Otorrinolaringólogo y Coordinador OR…
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International HHT Guidelines: Liver Vascular Malformations (Recorded)
Dr. Kevin Whitehead, Co-Director, University of Utah HHT Center of Excellence and Dr. Josanna Rodriguez-Lopez, Director, Massachusetts General Hospital HHT Cent…
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International HHT Guidelines: Pulmonary AVMs (Recorded)
Dr. Miles Conrad, Co-Director, University of California San Francisco HHT Center of Excellence and Dr. Mollie Meek, Director, University of Arkansas for Medical…
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HHT Medical Emergency Wallet Card
In the event of an emergency, this printable compact medical card is wallet-sized and can speak for an HHT patient when they can’t. The card features a descript…
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International HHT Guidelines: Pregnancy and Women’s Issues (Recorded)
Dr. Andrea Lausman, Maternal Fetal Medicine Specialist, and Dr. Filomena Meffe, Chief, Department of Obstetrics and Gynecology, at the Toronto HHT Centre of Exc…
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Nuts and Bolts of A Clinical Trial – the PATH-HHT Study (Recorded)
Research is the key to the future health and quality of life for HHT patients. “Diseases can only be cured when scientists understand them. This understanding,…
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International HHT Guidelines: Pediatrics (Recorded)
Dr. Andrew White, Co-Director, Washington University / St. Louis Children’s Hospital HHT Center of Excellence and Dr. Adrienne Hammill, Director, Cincinnati Chi…
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Meta | Science Discovery Platform
Meta is a free research discovery tool from the Chan Zuckerberg Initiative, providing a faster way to understand and explore science through personalized feeds….
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Las Guías Internacionales de HHT: Anemia (Recorded)
El Dr. Marcelo Serra, Internista y Director de la Unidad de HHT, Hospital Italiano de Buenos Aires y la Dra. Yesica Lijdens, Otorrinolaringóloga del HHT Hospita…
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Cure HHT Actualizaciones Oficiales de Salud: Coronavirus Disease (CV)
Página de Actualizaciones de salud oficiales de Cure HHT relacionada con COVID-19, que incluye actualizaciones y declaraciones oficiales, así como enlaces y otr…
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Mi Checklist Sobre Cuidados de HHT: Nasales
Las listas de verificación “Mi HHT” son una serie de listas de verificación por área temática para que las personas con HHT se autogestionen y las lleven a su m…
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Mi CHECKLIST Sobre Cuidados de HHT: Anemia
Las listas de verificación “Mi HHT” son una serie de listas de verificación por área temática para que las personas con HHT se autogestionen y las lleven a su m…
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International HHT Guidelines: GI Bleeding Management
Dr. Murali Chakinala, Co-Director, Washington University HHT Center of Excellence and Dr. Vivek Iyer, Director, Mayo Clinic HHT Center of Excellence as they dis…
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