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.
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…
More
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…
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
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…
More
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…
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
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
Lung (Pulmonary) Arteriovenous 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
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
My HHT Pulmonary AVM 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…
More
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…
More
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…
More
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…
MoreRelated News
Cure HHT Participates in PHA’s Associated Conditions Summit
Individuals with HHT have a greater risk of developing pulmonary hypertension. Statistically, 15-20% of HHT patients have PH. In November 2021, Cure HHT participated in the The Pulmonary Hypertension…
NEW Research Surveys Available!
January 28, 2021
Virtual Meet-Up: HHT & COVID – 1 Year Later (Recorded)
January 13, 2021
