Hereditary Hemorrhagic Telangiectasia (HHT)

University HospitalThe HHT Center at the University of Utah 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.

patient

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.

Research

The faculty at the University of Utah 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.

Pinar Bayrak-Toydemir, M.D., Ph.D.

Dr. Bayrak-Toydemir has focused her research efforts on understanding the molecular genetic characteristics of inherited vascular diseases. She primarily studies Hereditary Hemorrhagic Telangiectasia (HHT) disease. In addition to HHT, her research aims to identify genes that cause various inherited vascular malformations. Dr. Bayrak-Toydemir is... Read More

Specialties:

Clinical Scientist

Locations:

A location has not yet been added by this physician.

Johannes F. Grimmer, M.D.

Patient Rating:

4.6

4.6 out of 5

Dr. Grimmer has an interest in pediatric head and neck surgery including cancer, airway reconstruction, congenital neck masses, thyroid disease, and vascular birthmarks. He is the Director of the Vascular Anomalies Center at Primary Children's Medical Center and coordinates the multidisciplinary care that such patients often require. He serves on... Read More

Specialties:

Otolaryngology, Head & Neck Surgery, Pediatric Otolaryngology, Vascular Malformations

Locations:

PCH Outpatient Services at Riverton (801) 662-1740
Primary Children's Hospital
Pediatric Otolaryngology/ENT
(801) 662-1740
University Hospital
Otolaryngology/ENT, Clinic 9
(801) 662-1740

Jennifer Juhl Majersik, M.D., M.S.

Patient Rating:

4.8

4.8 out of 5

Dr. Majersik is an Associate Professor of Neurology at the University of Utah, School of Medicine. After receiving her B.S. in Physics from Harvey Mudd College (Claremont, CA), she served in the Air Force as a Scientific Analyst at Wright-Patterson Air Force Base National Air Intelligence Center. In 1997, she attended medical school at University o... Read More

Jamie McDonald, M.S., L.G.C.

Jamie is an Assistant Professor in the Department of Pathology. She received an undergraduate degree from Carleton College in biology, and a master's degree in Genetic Counseling at the University of California at Berkeley in 1986. She is certified as a Genetic Counselor by the American Board of Medical Genetics and American Board of Genetic Coun... Read More

Specialties:

Genetic Counselor, Hereditary Hemorrhagic Telangiectasia

Locations:

A location has not yet been added by this physician.

Bryan R. McRae, M.D.

Patient Rating:

4.7

4.7 out of 5

Bryan R. McRae, M.D., is a specialist in Otolaryngology-Head & Neck Surgery. Along with the treatment of common conditions in adults and children (tonsillectomy, hearing loss, facial trauma repair, etc.), Dr. McRae has interests and training in a wide range of ear, nose, and throat disorders, including laryngology and vocal lesions, chronic ear dis... Read More

Specialties:

Otolaryngology, Head & Neck Surgery, General Otolaryngology ENT

Locations:

South Jordan Health Center (801) 213-4500
University Hospital
Otolaryngology/ENT, Clinic 9
(801) 587-8368

Ryan G. O'Hara, M.D.

Patient Rating:

4.7

4.7 out of 5

Dr. O’Hara completed his medical training at the University of Washington in Seattle followed by training in diagnostic radiology at Sacred Heart Medical Center in Spokane, Washington. He then travelled to Philadelphia to pursue fellowship training in Vascular and Interventional Radiology at the University of Pennsylvania and obtained a certificate... Read More

George M. Rodgers, III, M.D., Ph.D.

Patient Rating:

4.6

4.6 out of 5

George M. Rodgers, M.D., Ph.D. is a Professor of Medicine in the Division of Hematology and Hematologic Malignancies, Department of Internal Medicine at the University of Utah School of Medicine. He also holds an appointment as an adjunct Professor in the Department of Pathology. He is not only the adult hemophilia and thrombosis expert in the st... Read More

Specialties:

Benign Hematology, Coagulation, Hematology/BMT, Hereditary Hemorrhagic Telangiectasia

Locations:

Huntsman Cancer Hospital
Hematology Clinic
(801) 585-2626

N. Jewel Samadder, M.Sc., M.D.

Patient Rating:

4.8

4.8 out of 5

Dr. Samadder received his medical degree from the University of Toronto (Canada) where he also completed his internal medicine residency. He subsequently completed a fellowship in Gastroenterology at the University of Michigan (Ann Arbor, MI) and an Advanced Endoscopy fellowship at the Mayo Clinic (Rochester, MN). During his gastroenterology fellow... Read More

Specialties:

Clinical Genetics, Gastroenterology, Colon Cancer, Gastrointestinal Cancers, Pancreatic Cancer

Locations:

Huntsman Cancer Institute
Endoscopy
(801) 213-9797
South Jordan Health Center (801) 213-9797

Richard H. Schmidt, M.D., Ph.D.

Patient Rating:

4.6

4.6 out of 5

Dr. Schmidt specializes in the neurosurgical treatment of cranial disorders including brain tumors, meningiomas, aneurysms and vascular malformations, Chiari malformation, hydrocephalus, head trauma and critical care problems. Dr. Schmidt has been a cerebral vascular neurosurgeon at the University of Utah since 1993, providing comprehensive care o... Read More

Edwin A. Stevens, M.D.

Edwin A. "Steve" Stevens, MD is Professor and Chair of the Department of Radiology at the University of Utah. Dr. Stevens is an interventional neuroradiologist who treats neurological diseases by endovascular and minimally invasive techniques guided by imaging. Dr. Stevens has given over 50 presentations, published over 30 articles and book chapter... Read More

Kevin J. Whitehead, M.D.

Patient Rating:

4.8

4.8 out of 5

Kevin Whitehead, MD is an Associate Professor of Cardiovascular Medicine at the University of Utah, and Adjunct Associate Professor of Pediatric Cardiology at Primary Children's Medical Center. He also is an Attending Physician at the George E. Wahlen Veterans Affairs Medical Center. He is co-director of the Utah Adult Congenital Heart Disease cent... Read More

Specialties:

Adult Congenital Heart Disease, Cardiology, Echocardiography, Hereditary Hemorrhagic Telangiectasia

Locations:

Saint Alphonsus Regional Medical Center (208) 367-2121
University Hospital
Cardiovascular Center
(801) 585-7676
University Hospital
Utah Adult Congential Heart Clinic
(801) 585-7676
University Hospital
HHT Center
(801) 581-8188
William B. Ririe Hospital & Rural Health Clinic (775) 289-3612

Kevin F. Wilson, M.D.

Patient Rating:

4.6

4.6 out of 5

Kevin F. Wilson, M.D., is a board-certified physician specializing in otolaryngology and head and neck surgery. Dr. Wilson received his medical degree from Washington University’s School of Medicine. He is a member of the American Academy of Otolaryngology and a Fellow of the American Academy of Otolaryngic Allergy, having received advanced trainin... Read More

HHT Center 30 North 1900 East, #1A71
Salt Lake City, UT 84132
Map
(801) 581-8818