Mi Checklist Sobre HHT Cuidados: Malformaciones Vasculares Cerebrales (MVC)
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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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 the importance of g…
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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 in t…
MoreAbstracts – 14th HHT International Scientific Conference (2022)
Angiogenesis. This article is open access and free for a certain period of time; otherwise, it is available for purchase directly from the publisher. Click to v…
MoreExecutive Summary – 14th HHT International Scientific Conference (2022)
Angiogenesis. This article is open access and free for a certain period of time; otherwise it is available for purchase directly from the publisher. Click to vi…
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HHT Family Ambassadors & Communicating with Family
FB Live Event – Join Sara Palmer, PhD, author of Living with HHT, and Riley Blevins of Cure HHT as they navigate discussing HHT with family members and the impo…
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Angel Flight NE
Angel Flight NE is a non-profit organization providing FREE medical air transportation for individuals with limited financial resources, including those sufferi…
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Uncovering Your Roots: Decoding Genetic Testing
Discover the power of genetic testing as we uncover the roots of HHT! Join us for an enlightening online education opportunity with Theodore Drivas, MD, PhD, Un…
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Iron and HHT: Boosting Your Health & Energy with Iron-Rich Foods
Calling all foodies! Grab your apron and head to the kitchen to join Registered Dietitian Nutritionist Kat Benson for our most sizzling online education opportu…
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Dietary Iron & HHT
Iron deficiency is a common and important manifestation of HHT. Lack of iron makes it harder to produce red blood cells (RBCs), has symptoms similar to anemia,…
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Research Roundtable: An Inside Look at Exciting Clinical Trials
Delve into the exciting clinical research projects underway in HHT! Cassi Friday, PhD will provide an overview of what goes into a clinical trial. Dr. Marie Fau…
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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. 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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No-Cost Genetic Testing for HHT and Other Rare Diseases: 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 singe…
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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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