Newly Diagnosed
Resources to guide newly diagnosed patients through initiating screening and treatment locally and at HHT Centers of Excellence.
Related Resources

HHT Facts at a Glance
Fact Sheet – 2016The most critical HHT information highlighted on a single sheet. HHT Quick Facts provides you and your physician critical information about organs typically involved, symptoms of the disease, need for prophylactic antibiotics and use of IV filters.
MoreExecutive Summary – 11th HHT International Scientific Conference (2015)
Scientific Literature – 2015Angiogenesis. Authors: Helen Arthur, Urban Geisthoff, James R. Gossage, Christopher C. W. Hughes, Pascal Lacombe, Mary E. Meek, Paul Oh, Beth L Roman, Scott O. Trerotola, Sebastiaan Velthuis, and Whitney Wooderchak-Donahue. This article can be purcha…
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Optimal Management of HHT
Scientific Literature – 2014Journal of Blood Medicine. Authors: Neetika Garg, Monica Khunger, Arjun Gupta, and Nilay Kumar. This article is available for public use and does not require purchase. Click to view the full article.
MoreOptimal Management of HHT
Scientific Literature – 2014HHT remains frequently underdiagnosed and many families do not receive the appropriate screening and treatments. This article provides an overview of the clinical features of HHT, discusses the clinical and genetic diagnostic strategies, and presents…
MoreA Long Diagnostic Delay in Patients with HHT
Scientific Literature – 2012Orphanet Journal of Rare Diseases. Authors: Paola Pierucci, Gennaro M. Lenato, Patrizia Suppressa, Patrizia Lastella, Vincenzo Triggiani, Raffaella Valerio, Mario Comelli, Daniela Salvante, Alessandro Stella, Nicoletta Resta, Giancarlo Logroscino, Fr…
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HHT International Clinical Guidelines (2009)
Guidelines – 2009Published by the Journal of Medical Genetics in 2009, the International Guidelines for the Diagnosis and Management of HHT (First “International Guidelines for the Diagnosis and Management of HHT”) is a comprehensive document to share with your physi…
MoreA Rare and Misdiagnosed Bleeding Disorder: Hereditary Hemorrhagic Telangiectasia
Scientific Literature – 2005Journal of Thrombosis and Haemostasis. Author: C. Sabba` This article is available for public use and does not require purchase. Click to view the full article.
MoreGenetics: HHT Overview
Scientific Literature – 2000GeneReviews. Authors: Jamie McDonald, MS, CGC and Reed E Pyeritz, MD, PhD, FACMG. This article is available for public use and does not require purchase. Click to view the full article.
MoreGenetics: HHT Overview
Scientific Literature – 2000Hereditary hemorrhagic telangiectasia (HHT) is characterized by the presence of multiple arteriovenous malformations (AVMs) that lack intervening capillaries and result in direct connections between arteries and veins. The most common clinical manife…
MoreRelated News
Town Hall: Cure HHT Centers of Excellence Program Updates
Upcoming Webinar: Town Hall: Cure HHT Center of Excellence Program Updates Tuesday, June 16Â |Â 1:00-2:00pm ET Cure HHT is committed to improving care, supporting providers, and helping ensure…
Brain AVMS – Recent Advances in Imaging and Management
April 14, 2026
Ask the Nurse: A Conversation on Pediatric HHT
March 12, 2026
67th ASH Annual Meeting and Exposition
October 2, 2025
