Brain
Resources for understanding issues that affect the brain in HHT patients including brain AVMs, stroke, brain infections, migraines and seizures. This section will include screening recommendations and treatment options.
Related Resources
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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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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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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Mi Checklist Sobre HHT Cuidados: Malformaciones Vasculares Cerebrales (MVC)
Español, Patient Tool – 2023Las 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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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…
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HHT International Guidelines: Brain Vascular Malformations (VMs) (Recorded)
Webinar – 2021Dr. Marie Faughnan, Director, Toronto HHT Centre of Excellence, discusses Brain Vascular Malformations (VMs) as they relate to HHT. Dr. Faughnan is a renowned HHT specialist and will walk the audience through a comprehensive overview of what a brain…
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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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Brain (Cerebral) Vascular Malformations & 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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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.
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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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My HHT Brain VM 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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Webinar: Mental Health & HHT
Mental Health & HHT Tues., May 24th | 12:00 p.m. (ET) Living with Hereditary Hemorrhagic Telangiectasia (HHT) presents unique physical challenges, and this webinar will address the often-overloo…
More Than A Nosebleed: In Loving Memory of Harper
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HHT Kids Day – San Francisco
July 13, 2024
June Awareness – Be an HHT Changemaker!
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A Monumental $128 Million Step Forward for HHT Research
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