HHT Center of Excellence
The UCSF HHT Center of Excellence specializes in the comprehensive screening, diagnosis and treatment of hereditary hemorrhagic telangiectasia (HHT), a genetic disorder affecting the blood vessels. We have been designated a center of excellence by Cure HHT, the leading organization for HHT research, education and patient advocacy.
Because HHT can affect multiple parts of the body, our team includes experts in numerous fields. These include interventional and neurointerventional radiology, pediatrics, medical genetics, hematology, otolaryngology – head and neck surgery, cardiology, dermatology, gastroenterology, neurology, neurological surgery and pulmonology.
We trace each patient's genetic history of HHT and work closely with referring doctors to develop a personalized treatment plan.
Our clinic is associated with the UCSF Center for Cerebrovascular Research (CCR), which focuses its studies on vascular malformations of the brain. The CCR has a special interest in HHT, one of the few inherited causes of brain arteriovenous malformations (abnormal arteries and veins tangled together).
Our Services
- Patient education and management of HHT-associated symptoms and complications
- The most advanced screening and diagnostic tests for serious complications of HHT, such as arteriovenous malformations
- Minimally invasive approaches to treating HHT, offered at state-of-the art interventional and neurointerventional radiology facilities
- Care by the neurointerventional radiologists who pioneered many of the treatments for arteriovenous malformations
Images and reports
Getting your results
A radiologist will review your images and write a report. When finalized, the report and your images will be available in MyChart, UCSF's secure online portal for patients. You can access this report as soon as this occurs, so you may see it before your referring doctor does. Learn more about receiving test results and medical reports in MyChart. If you have questions about a report, please contact your referring doctor.
To get a CD of your medical images and reports, send a request to the UCSF Imaging Library.
Sending images to UCSF
If you need to send medical images that were taken at another institution to your UCSF radiologist, you can do so through our secure online portal. For instructions, visit How to Send Radiology Images to UCSF.
Doctor referral may be required
Our locations
Our team
-
Mandar A. Aras
MD, PhD
Cardiologist -
Anna Butrymowicz
MD
Otolaryngologist -
Miles B. Conrad
MD, MPH
Interventional radiologist -
Teresa De Marco
MD, FACC, FHFSA
Cardiologist -
Heather Fullerton
MD, MAS
Pediatric vascular neurologist -
Ilona J. Frieden
MD
Pediatric dermatologist -
Andrew N. Goldberg
MD, MSCE, FACS
Otolaryngologist -
Jose G. Gurrola II
MD
Rhinologist and skull base surgeon -
Steven W. Hetts
MD
Neurointerventional radiologist -
Nerissa U. Ko
MD
Neurologist -
Jennifer C. Lai
MD, MBA, FACP
Hepatologist -
Andrew D. Leavitt
MD
Hematologist -
Patricia A. Loftus
MD
Rhinologist and skull base surgeon -
R. Peter Lokken
MD, MPH
Interventional radiologist -
Neil Mehta
MD
Hepatologist -
Andrew H. Murr
MD
Otolaryngologist -
Kazim Narsinh
MD
Neurointerventional radiologist -
Isaac M. Neuhaus
MD
Dermatologic surgeon -
Michael Ohliger
MD, PhD
Radiologist -
Steven D. Pletcher
MD
Otolaryngologist -
Joseph Shieh
MD, PhD
Medical geneticist -
Thiennu Vu
MD, PhD
Pulmonologist -
Daniel (Danny) Langston
NP, MSN
Nurse practitioner -
Darcy Phelan
NP, MSN
Nurse practitioner
Clinical trials
Comprehensive HHT Outcomes Registry of the United States (CHORUS)
Utilizing the "HHT Baseline Assessment Scale," this measure focuses on recruiting a diverse cohort of HHT patients across North America. Comprehensive baseline clinical, demographic, and lifestyle data will be collected and entere...
Recruiting
ALTA TIPS: A 5-year Longitudinal Observational Study of Patients Undergoing TIPS Placement
Transjugular Intrahepatic Portosystemic Shunt (TIPS) was first developed as a salvage tool for life threatening variceal bleeding or for the management of severe ascites refractory to medical therapy. Over the past decade there ha...
Recruiting
Cerebral Hemorrhage Risk in Hereditary Hemorrhagic Telangiectasia
This study will investigate predictors of brain outcomes in HHT patients. The investigators hypothesize that the presence of brain arteriovenous malformation (BAVM) in HHT patients versus HHT patients without BAVM and multiplicity...
Recruiting
Hyperpolarized Pyruvate (13C) Magnetic Resonance Imaging In Patients With Fatty Liver Disease
Establishing suitable radiofrequency (RF) coils for individual applications and proper use of MRI techniques such as parallel imaging to achieve optimal image quality will be conducted during the participant's scan. There is no fo...
Recruiting
Support services
Plan your visit
What to Bring
- Photo I.D.
- Health insurance card
- Insurance authorization, if required
- Doctor's referral, if required
- Recent test results related to your condition
- List of your medications, including dosages, plus any you're allergic to
- List of questions you may have
- Device or paper for taking notes
Related clinics
Our research initiatives
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UCSF Center for Cerebrovascular Research
The UCSF Center for Cerebrovascular Research studies many aspects of cerebrovascular disease, from genetics to treatment outcomes, with a focus on vascular malformations of the brain.
