Anemia/ Iron Deficiency
Resources addressing the causes, symptoms, and treatment of anemia/iron deficiency.
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A New Option for Chronic Nosebleeds: Is Sclerotherapy Right for You? (Recorded)
Webinar – 2024Join us to learn about sclerotherapy, an innovative treatment offering hope to HHT patients suffering from chronic nosebleeds. Dr. Jay Piccirillo, ENT at Washington University, explains how this minimally invasive therapy works, its benefits, who qua…
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United States Map of Nasal Sclerotherapy Providers
Patient Tool, Provider Tool – 2024This Map shows the current US HHT experts that perform nasal sclerotherapy as of November, 2024. This image was created by Dr. Jay Piccirillo at Washington University. Please note that local providers may also offer nasal sclerotherapy.
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Stopping the Flow: A Comprehensive Guide to HHT Nosebleed Management (Recorded)
Webinar – 2024Join us as Dr. Jeb Justice, co-director of the HHT Center of Excellence at University of Florida, goes over a variety of ways you can help manage your HHT-related nosebleeding. Treatments available for patients are rapidly evolving. Learn about all t…
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Anemia, Deficiencia de Hierro y HHT
Español, Fact Sheet – 2024Hoja informativa complementaria a los recursos para pacientes de Mi Checklist Sobre HHT Cuidados, y basada en las actualizaciones de las Segundo HHT Internacional Directrices publicadas en Annals of Internal Medicine en 2020.
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How to Be an HHT Changemaker Part 1: Drive Research (Recorded)
Webinar – 2024Participating in research is the ultimate way to be an HHT changemaker. We have two exciting new projects to share with you, HHT Connect and the Cure HHT BioBank. Courtney Kasturiarachi, MPH, walks you through everything you need to know about HHT Co…
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NEW Criteria! Groundbreaking Trial for HHT: Learn About Pazopanib (Recorded)
Webinar – 2024Your questions answered about our newest clinical trial with NEW expanded criteria! Join Cassi Friday, PhD and Jim Gossage, MD as they explain who is now eligible, what Pazopanib is, and how you can get involved!
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Caring for HHT Through the Generations (Recorded)
Webinar – 2024Drs. Adrienne Hammill, Center Director at Cincinnati Children’s Hospital and Kevin Whitehead, Center Director at University of Utah. Dr. Hammill guides you through the early stages of life, covering genetic testing, prenatal care, and the significanc…
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Pazopanib: A Groundbreaking Trial for HHT (Recording)
Webinar – 2023Get your questions answered about our newest clinical trial! Join Cassi Friday, PhD and Jim Gossage, MD as they explain who is eligible, what Pazopanib is and how you can get involved!
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Iron and HHT: Boosting Your Health & Energy with Iron-Rich Foods
Video, Webinar – 2023Calling all foodies! Grab your apron and head to the kitchen to join Registered Dietitian Nutritionist Kat Benson for our most sizzling online education opportunity yet, as she leads you through an interactive cooking demonstration! Kat discusses the…
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Dietary Iron & HHT
Fact Sheet – 2023Iron 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, and makes anemia more likely to occur with active bleeding as the body will not have the n…
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Research Roundtable: An Inside Look at Exciting Clinical Trials
Webinar – 2023Delve 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 Faughnan (Brain AVM Study), Dr. Keith McCrae (PATH Study), Dr. James Gossage (Pazopanib Trial…
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A Comprehensive Guide to Managing Your HHT
Brochure, Fact Sheet, Patient Tool – 2022We’ve taken the International HHT Guidelines and distilled them into easily readable factsheets and checklists that can be filled out and given to your physicians. The result is a beautifully bound and curated 48-page publication, A Comprehensive Gui…
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Bedside to Bench: How the HHT Community Drives Research Initiatives (Recorded)
Webinar – 2021In 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 ambitious project is lifting up the work that patient communities are doing to accelerate resear…
MoreIron Replacement in HHT
Policy Statement – 2021Iron deficiency anemia is common in people with HHT with an estimated prevalence of 50%. Further, a number of people with HHT develop symptomatic iron deficiency without anemia. Iron deficiency is an under recognized and sub-optimally managed complic…
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Las Guías Internacionales de HHT: Anemia (Recorded)
Español, Webinar – 2021El Dr. Marcelo Serra, Internista y Director de la Unidad de HHT, Hospital Italiano de Buenos Aires y la Dra. Yesica Lijdens, Otorrinolaringóloga del HHT Hospital Italiano de Buenos Aires, brindan información sobre los conceptos de anemia aplicados al…
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Ask the Nurse: March Session
Have questions? We’re here to help. Get your HHT questions answered by Janie Sims, an HHT clinical nurse specialist — who works at Augusta University Medical Center, an HHT Center of Excellence. Join…
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