A Comprehensive Guide to Managing Your HHT
We’ve taken the International HHT Guidelines and distilled them into easily readable factsheets and checklists that can be filled out and given to your physicia…
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The Rare Genomes Project
The Rare Genomes Project is a patient-driven research project through the Broad Institute that performs full genome sequencing on families with suspected rare d…
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HHT Medical Emergency Wallet Card
In 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 descript…
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Mi Checklist Sobre Cuidados de HHT: Nasales
Las 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 m…
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Mi CHECKLIST Sobre Cuidados de HHT: Anemia
Las 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 m…
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COVID-19 Official Updates Page
Cure HHT Official Health Updates page related to COVID-19, including official updates and statements, as well as links and other resources.
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HHT and COVID-19: Basics and What We Know in HHT
Dr. Justin McWilliams’ presentation slides related to HHT and COVID-19 from the 2021 Virtual Meet-Up, HHT and COVID: 1 Year Later. Dr. McWilliams is an Interven…
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HHT and COVID-19: Vaccines
Dr. Marie Faughnan’s presentation slides related to HHT and COVID-19 vaccinations, from the 2021 Virtual Meet-Up, HHT and COVID: 1 Year Later. Dr. Faughnan is a…
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HHT and COVID-19: Clotting and Anemia
Dr. Raj Kasthuri’s presentation slides related to HHT, COVID-19 and clotting and anemia, for the 2021 Virtual Meet-Up, HHT and COVID: 1 Year Later. Dr. Kasthuri…
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My Teen Years HHT Care Checklist
The “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 b…
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My HHT Nosebleed Care Checklist
The “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 b…
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My HHT Liver VM Care Checklist
The “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 b…
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My HHT GI Bleeding Care Checklist
The “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 b…
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My HHT Diagnosis Checklist
The “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 b…
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My HHT Care Checklist
The “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 b…
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My HHT Brain VM Care Checklist
The “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 b…
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My HHT Pulmonary AVM Care Checklist
The “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 b…
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My Child’s HHT Care Checklist
The “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 b…
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My HHT Pregnancy & Delivery Care Checklist
The “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 b…
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My HHT Anemia and Iron Deficiency Care Checklist
The “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 b…
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Cure HHT Social Media Channels
Get the lastest information on everything HHT — clinical trials, educational events, regional awareness activities, revised clinical guidelines, COVID-19 updat…
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COVID-19 Fact Check Links
How do you know if what you are being told about COVID-19 is true? Before sharing information with friends and family, make sure you use these reliable fact che…
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When learning about COVID-19, it is important that you receive reliable information from vetted sources about COVID-19.
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My HHT Tracker – URL Links
My HHT Tracker app allows you to educate yourself about HHT and track your health at no cost to the user. The app is available on Apple iOS only. Use the app to…
MoreMy HHT Tracker Quick Guide
My HHT Tracker app allows you to educate yourself about HHT and track your health at no cost to the user. The app is available on Apple iOS only. Use the app to…
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Living with HHT: Understanding and Managing Your Hereditary Hemorrhagic Telangiectasia
By Sara Palmer, PhD In this recently published book, psychologist Sara Palmer, who has HHT herself and is an expert in helping people cope with health condition…
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Explanation of HHT and the Troubles Caused Throughout the Body
A simple, visual explanation of HHT and how the disease can impact the body. You can use this resource to educate yourself, family members, school nurses and te…
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Glossary of HHT Terms
Your Guide to HHT Medical Terminology. HHT impacts multiple organs and is defined by a variety of medical terms. To advocate for your healthcare you need to und…
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Epistaxis Severity Score
The ESS was developed through a Cure HHT research grant. This online tool is to calculate the severity score of nosebleeds. Want to know if your nosebleed treat…
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Epistaxis Journal
Track your nosebleeds with this journal developed by an ENT specializing in HHT. It is important to give your doctor an accurate picture of your nosebleed histo…
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