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HHT Center of Excellence

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(415) 353-8867

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).

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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

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    Decorative Caduceus

    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

    Decorative Caduceus

    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

    Decorative Caduceus

    Functional Assessment in Liver Transplantation

    Grip strength: Performance-based. Measured in kilograms. This was measured in each subject's dominant hand using a hand dynamometer (Jamar Hydraulic hand dynamometer). We averaged three trials. Chair stands: Performance-based. Me...

    Recruiting

    Decorative Caduceus

    Pomalidomide for the Treatment of Bleeding in HHT

    To determine efficacy of pomalidomide compared to placebo for the change in Epistaxis Severity Score in the placebo and pomalidomide-treated group. The responses to each of the questions are converted to give a normalized ESS sco...

    Recruiting

    Decorative Caduceus

    Effects of RT234 on Exercise Parameters Accessed by CPET in Subjects With PAH

    TEAEs as grouped by MedDRA system organ class and relationship to treatment.

    Recruiting

    Support services

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    Class

    Mindfulness-Based Stress Reduction Class

    This eight-week class teaches mindfulness practices that can reduce stress and improve your overall health, such as meditation and body awareness.

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    Spiritual Care Services

    Chaplains representing many faiths are available around the clock to provide support, comfort and counsel to patients, families and caregivers.

    Preparing for your appointment

    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

    International Services

    If you live outside the United States and are coming to UCSF for medical treatment, our patient liaisons can help coordinate all aspects of your visit.

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    Interpreting Services

    UCSF offers interpreters in various languages, including American Sign Language (ASL), as well as services for deaf, hard-of-hearing and visually impaired patients.

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    Our research initiatives

    • UCSF-Center-for-Cerebrovascular-Research-2x

      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.

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