Newly Diagnosed
Resources to guide newly diagnosed patients through initiating screening and treatment locally and at HHT Centers of Excellence.
Related Resources
Know the Signs & Symptoms of HHT
Fact Sheet – 2016Recognizing HHT symptoms is half the battle. Knowing the signs and symptoms of HHT can help save a life.
MoreTalking to Your Physician about HHT
Fact Sheet – 2016It’s important to talk to your doctor about your HHT. Use this fact sheet as a resource when you and your doctor discuss your HHT treatment and management plan.
MoreLiving with HHT
Fact Sheet – 2016Living with HHT can be stressful at times, and most people can manage it. HHT does not have to define your life. Follow these six simple steps and start living life with HHT.
MoreHHT & Depression
Fact Sheet – 2016The stress of living with a genetic disease can lead to depression. Learn how to recognize the signs and symptoms.
MoreMy Partner Has HHT
Fact Sheet – 2016When your partner or spouse has HHT, you are also affected by the disease. Learn how your partner is affected by HHT, what you can do to help them, how to prepare for parenting and ways to take care of yourself.
MoreDiagnosis and Misdiagnosis of HHT
Fact Sheet – 2016HHT signs and symptoms are not recognized and often mistaken for other conditions. Misdiagnosis and delay in diagnosis pose the greatest risk to a person with HHT. Knowing the common misdiagnoses can lead to faster identification of HHT, life-saving…
MoreHHT 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.
MoreAdvice For People Newly Diagnosed With HHT
Fact Sheet – 2016You’ve just been diagnosed with HHT, now what? This fact sheet will help guide you through your recent diagnosis.
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…
MoreOptimal 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…
MoreHHT 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 – 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
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…