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Lungs

Resources for understanding issues that affect the lungs in HHT patients including lung AVMs and pulmonary hypertension. This section will include screening recommendations and treatment options.

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Malformaciones Arteriovenosas (pulmonares) y HHT

Español, Fact Sheet – 2024

Hoja 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.

How to Be an HHT Changemaker Part 1: Drive Research (Recorded)

Webinar – 2024

Participating 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…

Mi CHECKLIST Sobre HHT Cuidados: Malformaciones Arteriovenosas Pulmonares (MAVP)

Español, Patient Tool – 2023

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 médico. Estas listas de verificación se basan en el cuidado recomendado en las guías de HHT…

Research Roundtable: An Inside Look at Exciting Clinical Trials

Webinar – 2023

Delve 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…

The Connection Between HHT and PH

Video – 2022

Learn more about the connection between HHT and PH, disease management, signs and symptoms and more during this recorded Facebook Live event with Dr. Ali Ataya and Cure HHT Chief Medical Officer, Dr. Scott Olitsky. Click image below to watch video.

PH and HHT: Signs, Symptoms and Disease Management (Recorded)

Webinar – 2022

PHA 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…

A Comprehensive Guide to Managing Your HHT

Brochure, Fact Sheet, Patient Tool – 2022

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…

Bedside to Bench: How the HHT Community Drives Research Initiatives (Recorded)

Webinar – 2021

In 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…

International HHT Guidelines: Pulmonary AVMs (Recorded)

Webinar – 2021

Dr. Miles Conrad, Co-Director, University of California San Francisco HHT Center of Excellence and Dr. Mollie Meek, Director, University of Arkansas for Medical Sciences HHT Center of Excellence discuss how to recognize the signs and symptoms of Pulm…

International HHT Guidelines – Overview (Recorded)

Webinar – 2021

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)

Español, Webinar – 2021

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…

Virtual Meet-Up: HHT & COVID – 1 Year Later (Recorded)

Webinar – 2021

A rare opportunity to receive factual information surrounding COVID-19 and HHT from leading HHT experts who have been on the frontlines since the very beginning of the COVID-19 pandemic. This interdisciplinary group of experts discuss the multiple as…

Imaging & HHT

Fact Sheet – 2021

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

Fact Sheet – 2021

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.

Lung (Pulmonary) Arteriovenous Malformations & HHT

Fact Sheet – 2021

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.

Lungs

Resources for understanding issues that affect the lungs in HHT patients including lung AVMs and pulmonary hypertension. This section will include screening recommendations and treatment options.

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