Newly Diagnosed
Resources to guide newly diagnosed patients through initiating screening and treatment locally and at HHT Centers of Excellence.
Related Resources
How to Be an HHT Changemaker Part 1: Drive Research
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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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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No-Cost Genetic Testing for HHT and Other Rare Diseases: Rare Genomes Project
Organization, Patient Tool, Provider Tool – 2022The Rare Genomes Project is a patient-driven research project through the Broad Institute that performs full genome sequencing on families with suspected singe gene disorders who do not have a genetic diagnosis. The goal of their project is two-fold:…
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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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HHT Medical Emergency Wallet Card
Patient Tool, Provider Tool – 2021In 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 description of HHT, recommended medical protocols, common HHT related complications, a link for ph…
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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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WEBINAR: Nociones básicas y generales sobre HHT (en español) (Recorded)
Español, Webinar – 2021Cure HHT se enorgullece de presentar el primer seminario web en ESPAÑOL. El Dr. Marcelo Serra, especialista en Medicina Interna y Director de la Unidad de HHT del Hospital Italiano de Buenos Aires, brinda una visión general de HHT que es comprensible…
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Imaging & 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.
MoreRelated News
HHT Kids Day – San Francisco
Do you live near San Francisco? We have an event for you! HHT Kids Day, co-hosted by UCSF HHT Center of Excellence and Cure HHT at the California Academy of Sciences Museum promises to be an amazing d…
E-News: Insider Connection
January 8, 2024
