Lungs
Resources addressing HHT-related issues that affect the lungs including pulmonary AVMs, pulmonary hypertension and brain abscess caused by lung involvement. This section will include screening recommendations and treatment options.
Related Resources
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…
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International HHT Guidelines: Pulmonary AVMs (Recorded)
Webinar – 2021Dr. 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…
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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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Virtual Meet-Up: HHT & COVID – 1 Year Later (Recorded)
Webinar – 2021A 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…
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Screening for pulmonary and brain vascular malformations is the North American standard of care for patients with hereditary hemorrhagic telangiectasia (HHT): A survey of HHT Centers of Excellence
Scientific Literature – 2020Vascular Medicine. Authors: Alexandra Kilian, Marianne S. Clancy, Scott Olitsky, James R. Gossage and Marie E. Faughnan. This article is available for public use and does not require purchase. Click to view the full article.
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Patient Symptom & Care Checklists
Provider Tool – 2020Download and distribute “My HHT Care Checklists” to patients to complete and return to you, including: HHT Care, HHT Diagnosis, Anemia, Brain VMs, Pediatric, Teen Years, Nosebleed, GI Bleeding, Liver VMs, Pregnancy & Delivery, and Pulmonary AVMs….
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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…
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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…
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Physician Fact Sheet
Fact Sheet – 2020A 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…
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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…
MoreAbstracts – 13th HHT International Scientific Conference (2019)
Scientific Literature – 2019Angiogenesis. This article can be purchased directly from the publisher. Click to view the article description and purchase options.
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HHT Lung AVMs – A Tangled Web (recorded)
Webinar – 2019Dr. David Riggans, Interventional Radiologist from the Augusta Vascular Center at the Augusta University HHT Center presents his talk, “HHT Lung AVMs – A Tangled Web” from the Florida HHT Patient Conference. Dr. Riggans focuses on the importance of d…
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HHT Scientific Conference Summaries (recorded)
Webinar – 2018Drs. Hughes, Faughnan and Andrejecsk provide a first hand synopsis of the HHT science presented in Dubrovnik, Croatia where over 200 voices were heard from 23 countries. They reviewed the 12th HHT International Conference Executive Summary of…
MorePulmonary Arteriovenous Malformations (PAVMs) and Hereditary Hemorrhagic Telangiectasia (HHT)
Article – 2018Dr. Marie Faughnan, Cure HHT Scientific Research Director and Director of the HHT Center of Excellence at St. Michael’s Hospital / University of Toronto, provides a detailed overview of everything a medical professional needs to know about HHT and PA…
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