Genetics
Resources about the importance of genetic testing and how to obtain genetic testing and counseling for patients and families.
Related Resources
Discovering the HHT Genes: A Fireside Chat with Douglas Marchuk (Recording)
Webinar – 2026Our understanding of HHT is constantly evolving. If you haven’t been to a conference in a few years, or it’s been a while since you were last seen at an HHT Center of Excellence – this session is a must. In this session, you’ll learn: How were the 3…
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Knowledge is Power: The 5 Biggest Changes in HHT Care (Recording)
Webinar – 2026Our understanding of HHT is constantly evolving. If you haven’t been to a conference in a few years, or it’s been a while since you were last seen at an HHT Center of Excellence – this session is a must. In this Cure HHT webinar recording, we walk th…
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El Papel de la Genética en HHT (para pacientes)
Brochure, Español – 2024Para las personas que sospechan que podrían tener HHT, este folleto proporciona una descripción general de los signos, síntomas y genética de la HHT y describe la importancia de hacerse pruebas genéticas para confirmar o descartar un diagnóstico de H…
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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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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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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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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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Heartland Regional Genetics Network
Español – 2022Heartland Regional Genetics Network ofrece materiales gratuitos en español para la comprensión de la genética y las enfermedades raras.
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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…
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International HHT Guidelines: Diagnosis
Webinar – 2021Dr. 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 diagnosing HHT. Dr. McWilliams and Ms. Wusik walk the audience through how a…
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International HHT Guidelines – Overview (Recorded)
Webinar – 2021Join Dr. Marie Faughnan, Director, Toronto HHT Centre of Excellence as she provides an overview of the newly updated International HHT Guidelines and how they are used to set the standard of care globally for the diagnosis and treatment of HHT. Dr. F…
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Diagnosis of HHT
Fact Sheet – 2021Companion factsheet to the My HHT Care Checklists patient resources, and based upon updates from the Second International HHT Guidelines published in the Annals of Internal Medicine in 2020.
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My HHT Care Checklist
Patient Tool – 2020The “My HHT” checklists are a series of checklists by topic area for people with HHT to self-manage their care and bring to their doctor. These checklists are based on the care recommended in the HHT Guidelines. Start with the “Checklist for My HHT C…
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Brain AVMS – Recent Advances in Imaging and Management
Upcoming Webinar: Brain AVMS – Recent Advances in Imaging and Management Thursday, April 30 | 3:00-4:00 p.m. ET In this session Dr. Krings will describe recent advances in imaging, neurointer…
Ask the Nurse: A Conversation on Pediatric HHT
March 12, 2026
Knowledge is Power: The 5 Biggest Changes in HHT Care
December 4, 2025
Comprehensive Guide to Managing Your Nosebleeds
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