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 physicians. The result is a beautifully bound and curated 48-page publication, A Comprehensive Gui…

No-Cost Genetic Testing for HHT and Other Rare Diseases: 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 singe gene disorders who do not have a genetic diagnosis. The goal of their project is two-fold:…

International HHT Guidelines: Diagnosis

Dr. 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…

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 description of HHT, recommended medical protocols, common HHT related complications, a link for ph…

International HHT Guidelines – Overview (Recorded)

Join 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…

WEBINAR: Nociones básicas y generales sobre HHT (en español) (Recorded)

Cure 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…

Imaging & HHT

Companion 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.

Diagnosis of HHT

Companion 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.

HHT International Clinical Guidelines (2020)

Published by the Annals of Internal Medicine in 2020, the “Second International Guidelines for the Diagnosis and Management of HHT” is a comprehensive document to share with your physician. It outlines the screening, treatment and management of HHT a…

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 based on the care recommended in the HHT Guidelines. Start with the “Checklist for My HHT C…

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 based on the care recommended in the HHT Guidelines. Start with the “Checklist for My HHT C…

Physician Fact Sheet

A 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…

Cure HHT Social Media Channels

Get the lastest information on everything HHT — clinical trials, educational events, regional awareness activities, revised clinical guidelines, COVID-19 updates and so much more. Stay connected with Cure HHT!

Living with HHT (recorded)

Carrie Fiasco, Licensed Social Worker with the Cincinnati HHT Center of Excellence, explores the effects of HHT on your mental health and family relationships. In addition, learn coping skills that can help you live better with HHT, get tips on how t…

Genetic Testing and HHT