Gastrointestinal
Resources for understanding and treating issues that affect the digestive tract in HHT patients including GI bleeding and the screening and treatment for juvenile polyposis associated with the SMAD4 gene.
Related Resources
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…
MoreIron Replacement in HHT
Policy Statement – 2021Iron deficiency anemia is common in people with HHT with an estimated prevalence of 50%. Further, a number of people with HHT develop symptomatic iron deficiency without anemia. Iron deficiency is an under recognized and sub-optimally managed complic…
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International HHT Guidelines: GI Bleeding Management
Webinar – 2021Dr. Murali Chakinala, Co-Director, Washington University HHT Center of Excellence and Dr. Vivek Iyer, Director, Mayo Clinic HHT Center of Excellence as they discuss how to recognize the signs and symptoms of GI bleeding in HHT. Drs. Chakinala and Iye…
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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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Gastrointestinal (GI) Bleeding & 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 GI Bleeding 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…
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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…
MoreBevacizumab (Avastin) Use In HHT
Policy Statement – 2020Hereditary hemorrhagic telangiectasia (HHT, also known as OslerWeber-Rendu Syndrome) is a condition that is characterized by focal proliferation of blood vessels (vascular malformations) in multiple organs. Two of the most commonly affected organs in…
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The Science Behind the 2019 Scientific Conference (recorded)
Webinar – 2020Philippe Marambaud, PhD and Andy White, MD discuss important advances in HHT research which were presented at the 2019 HHT International Scientific Conference in Puerto Rico. Learn about advancements in drug therapies for bleeding, screening and trea…
MoreSystemic bevacizumab for the treatment of chronic bleeding in HHT
Scientific Literature – 2018Journal of Internal Medicine. Authors: Al-Samkari, H., Kritharis, A., Rodriguez-Lopez, J.M., and Kuter, D.J. This article can be purchased directly from the publisher. Click to view the article description and purchase options.
MoreAvastin Indication Table
Article – 2018Table detailing Criteria for IV Bevacizumab (Avastin) Use for Epistaxis and GI Bleeding. Resource taken from: Iyer, V. N., Apala, D. R., Pannu, B. S., Kotecha, A., Brinjikji, W., Leise, M. D., … Swanson, K. L. Intravenous Bevacizumab for Ref…
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