Overview

Hereditary Hemorrhagic Telangiectasia (HHT)

Hereditary Hemorrhagic Telangiectasia (HHT)

The HHT Center at University of Utah Health was established in 1995 to offer comprehensive care for HHT: hereditary hemorrhagic telangiectasia, a rare, inherited disorder. Diagnosis, screening and treatment are provided in a multi-specialty setting. DNA blood testing is performed in our molecular genetics laboratory (ARUP).

Most patients can have the consultation(s) and tests, recommended in their specific case, done during a one day visit to our center. Patients who need multiple treatments and consultations may have their appointments scheduled over several days. We offer expert, specialized treatment for the many and varied manifestations of HHT.

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Services

We also provide help with travel logistics and insurance authorizations, since most patients travel to our clinic from out-of-state. We carefully coordinate visits to assure thorough, efficient care, tailored to the medical needs of each individual. In order to appropriately schedule your visit, we obtain essential medical information about you by phone or email, as well as request previous relevant medical reports and records.

About HHT

HHT, hereditary hemorrhagic telangiectasia (also known as Osler-Weber-Rendu), is a genetic disorder of the blood vessels (a vascular dysplasia) characterized by telangiectases and arteriovenous malformation (AVM). Telangiectasia and AVMs can be described as blood vessels that are missing the normal capillary connection between an artery and vein, such that an artery is abnormally connected directly to a vein.

The word telangiectasia tends to be used if the abnormal blood vessel is small (pinpoint to pinhead size), and AVM is used if the abnormal blood vessel is bigger. These blood vessel abnormalities occur primarily in the nose, mouth, skin of the face and hands,  intestines, lungs, liver, and brain. HHT affects males and females in equal numbers and almost always affects multiple generations of a family. It tends to be very variable, even between members of the same family. 

Learn more about HHT.

Research

The faculty at the University of Utah Health HHT Center are actively involved in research to help understand the underlying causes of HHT, as well as the optimal management and treatment of the disorder. We discuss available research studies with our patients.

Patient Stories

The Utah HHT Center is pleased to give our patients with HHT a chance to share their experience with others living with HHT. We hope these stories help you with your journey.