Liver
Resources for understanding and treating issues that affect the liver in HHT patients including liver AVMs, liver failure, and liver transplantation.
Related Resources
How to Be an HHT Changemaker Part 1: Drive Research
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…
More
Mi CHECKLIST Sobre HHT Cuidados: Malformaciones Vasculares Hepáticas (MVH)
Español, Guidelines, 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…
More
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…
More
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…
More
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…
More
International HHT Guidelines: Liver Vascular Malformations (Recorded)
Webinar – 2021Dr. Kevin Whitehead, Co-Director, University of Utah HHT Center of Excellence and Dr. Josanna Rodriguez-Lopez, Director, Massachusetts General Hospital HHT Center of Excellence discuss Liver Vascular Malformations (VMs) as they relate to HHT. Both do…
More
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…
More
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.
More
Liver 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.
More
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.
More
My HHT Liver VM Care Checklist
Guidelines, 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…
More
My HHT Care Checklist
Guidelines, 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…
More
Ask the Doctor: HHT and Pulmonary Hypertension (recorded)
Webinar – 2020Dr. Scott Olitsky, Cure HHT Chief Medical Officer, and Michael Knaapen, Director, Patient and Caregiver Programs at the Pulmonary Hypertension Association, discuss the dual diagnoses of Hereditary Hemorrhagic Telangiectasia (HHT) and Pulmonary Hypert…
More
PH and HHT Patient Brochure
Brochure – 2020Did you know that if you have HHT you are at risk for Pulmonary Hypertension? The Pulmonary Hypertension Association developed a brochure for PH and HHT patients that provides answers for the most commonly asked questions. There are several HHT Cente…
MoreBevacizumab for treating HHT patients with severe hepatic involvement or refractory anemia
Scientific Literature – 2020PLoS One. Authors: Carolina Vázquez, María Laura Gonzalez, Augusto Ferraris, Juan Carlos Bandi, and Marcelo Martín Serra. This article is available for public use and does not require purchase. Click to view the full article.
MoreRelated News
HHT Kids Day – San Francisco
Do you live near San Francisco? We have an event for you! HHT Kids Day, co-hosted by UCSF HHT Center of Excellence and Cure HHT at the California Academy of Sciences Museum promises to be an amazing d…
Send hearts & kisses this special Rare Disease Month!
February 14, 2024
Uplifting Athletes Support the Rare Disease Community
February 6, 2024
Celebrate Rare on Rare Disease Day (Feb 29th)
February 3, 2024
An HHT patient conference can change your life
January 16, 2024