Newly Diagnosed
Resources to guide newly diagnosed patients through initiating screening and treatment locally and at HHT Centers of Excellence.
Related Resources
Mi CHECKLIST Sobre HHT Cuidados: Diagnóstico
Español, Patient Tool – 2024Las 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 médico. Estas listas de verificación se basan en el cuidado recomendado en las guías de HHT…
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Imágenes Diagnósticas 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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Diagnóstico de 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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Hemorragia Gastrointestinal 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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Hemorragias Nasales (epistaxis) 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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Malformaciones Vasculares Cerebrales 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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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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The Role of Genetics in HHT (for patients)
Brochure – 2023For 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 getting genetic testing to either confirm or rule out an HHT diagnosis. If you suspect that…
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HHT Family Ambassadors & Communicating with Family
Video – 2023FB 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 importance of being a family ambassador during HHT Awareness Month in June. Click image below…
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Uncovering Your Roots: Decoding Genetic Testing
Video, Webinar – 2023Discover 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, University of Pennsylvania HHT Center of Excellence, and Genetic Counselor, Zahra Girnary, U…
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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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Nosebleed Management – Nurse Cards
Patient Tool, Provider Tool – 2022This 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 nosebleeds. Additionally, the card is available for purchase in our store on durable cards…
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Back to School (tips for caregivers of children with HHT)
Video – 2022Facebook 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 head back to school. The duo covers a range of topics from how to discuss HHT with your sc…
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PH and HHT: Signs, Symptoms and Disease Management (Recorded)
Webinar – 2022PHA and Cure HHT – Murali M. Chakinala, M.D. discusses the importance of recognizing the signs and symptoms of Pulmonary Hypertension (PH) and Hereditary Hemorrhagic Telangiectasia (HHT), and the importance of early diagnosis as well as disease manag…
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2025 HHT Capitol Hill Day
2025 HHT Capitol Hill Day Wednesday, September 10, | 4-6pm ET Make a difference and let your voice be heard. Join us for an HHT Congressional Briefing in Washington, DC! Confirm your interest here.
HHT Kids Day – San Francisco
July 13, 2024
June Awareness – Be an HHT Changemaker!
June 1, 2024
A Monumental $128 Million Step Forward for HHT Research
April 3, 2024