Clinicians First Time Seeing a Patient with HHT
Resources to guide physicians initiating screening and treatment in patients. Included are handouts and factsheets to provide to patients and families.
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How to Be an HHT Changemaker Part 2: Educate Your Local Provider (Recorded)
Webinar – 2024YOU asked us to educate the medical community on HHT. Learn more about our new HHT Continuing Education Credit Online Platform in Part 2 of our “How to Be an HHT Changemaker” Series. Melissa Dickey, RN, MSN FNP, teaches you how to get your local prov…
MoreGuías clínicas internacionales HHT (2020)
Español, Guidelines, Provider Tool – 2023Publicada por Annals of Internal Medicine en 2020, las “Segundas pautas internacionales para el diagnóstico y tratamiento de la HHT” son un documento completo para compartir con su médico. Describe la detección, el tratamiento y el manejo de la HHT s…
MoreListas de verificación de atención y síntomas del paciente
Español, Provider Tool – 2023Descargue y distribuya “Mis listas de verificación de atención HHT” a los pacientes para que las completen y se las devuelvan, incluidas: atención HHT, diagnóstico HHT, anemia, VM cerebrales, pediatría, adolescencia, hemorragia nasal, sangrado gastro…
MoreAbstracts – 14th HHT International Scientific Conference (2022)
Scientific Literature – 2023Angiogenesis. 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 view resource.
MoreExecutive Summary – 14th HHT International Scientific Conference (2022)
Scientific Literature – 2023Angiogenesis. 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 view resource.
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Development and performance of a hereditary hemorrhagic telangiectasia-specific quality-of-life instrument
Scientific Literature – 2022Blood Advances. Authors: Raj S Kasthuri, Shruti Chaturvedi, Sonia Thomas, Nathan Vandergrift, Carla Bann, Nicole Schaefer, Marianne S Clancy, Reed Pyeritz, and Keith R McCrae. This article is available for public use and does not require purchase. Cl…
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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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Physician Webinar: The Role of Liver Imaging in HHT (Recorded)
Webinar – 2021Liver involvement occurs in approximately 75% of people with HHT. While many people are asymptomatic, the complications associated with liver involvement have historically been under diagnosed. These complications include arterioportal shunting leadi…
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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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Patient Symptom & Care Checklists
Provider Tool – 2020Download and distribute “My HHT Care Checklists” to patients to complete and return to you, including: HHT Care, HHT Diagnosis, Anemia, Brain VMs, Pediatric, Teen Years, Nosebleed, GI Bleeding, Liver VMs, Pregnancy & Delivery, and Pulmonary AVMs….
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Physician Fact Sheet
Fact Sheet – 2020A compact fact sheet that can be hung on your refrigerator or carried with you to a new physician appointment, and shared in the event of an unexpected trip to the emergency room where health care providers may be unfamiliar with HHT. This fact sheet…
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