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Hereditary Hemorrhagic Telangiectasia (HHT) Center

The Mass General Brigham HHT Center offers compassionate, family-centered multidisciplinary care. We strive to create an “HHT medical home” by offering a wide range of specialists, education and treatments.
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617-724-3705

Call the HHT Center at 617-724-3705.

6177243705
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About the program

Hereditary hemorrhagic telangiectasia (HHT), also known as Osler-Weber-Rendu disease, is the second most common inherited bleeding disorder in the U.S. and worldwide, with a prevalence twice that of hemophilia. In HHT, some blood vessels do not develop properly, which results in nosebleeds and other bleeding problems throughout the body. Additionally, complications of abnormal blood vessels (arteriovenous malformations or AVMs) can cause other complications, particularly in the lungs, brain, liver, and heart. The Mass General Brigham HHT Center offers diagnosis, genetic counseling, advanced and cutting-edge therapies, multidisciplinary evaluations and care coordination for people with this common (1 in 5000) genetic condition, and emphasizes the importance of the first step of making the correct diagnosis. We strive to create an “HHT medical home” while offering a wide range of specialists, treatments and education our patients. The Mass General Brigham HHT Center is recognized worldwide for our clinical and research excellence, and is certified an HHT Center of Excellence by the Cure HHT Foundation.

Our center includes Mass General, Mass General Brigham for Children, and Mass Eye and Ear. This collaboration allows us to provide specialized care across the lifespan.

Josanna Rodriguez-Lopez, MD and Hanny Al-Samkari, MD, Directors of the Mass General Brigham HHT Center, and the rest of our team provide a multidisciplinary approach to tackle all aspects of the condition.

Part of Lung Care

Diagnosis of HHT

Diagnosis of HHT includes:

  • Individual and family history, especially a history of nosebleeds
  • Focused examination, especially telangiectasias, (i.e. the appearance of dilated or broken blood vessels near the surface of the skin or mucous membranes)
  • Review of HHT clinical guidelines
  • Consideration of DNA-based genetic testing
  • Genetic counseling
  • Referral to other HHT subspecialists

Our services

We work with a range of specialties to provide the best care.

  • Pulmonology
  • Medical genetics and genetic counseling
  • Otolaryngology
  • Radiology: diagnostic, vascular interventional, CT, neuroradiology
  • Hematology/hepatology
  • Gastroenterology
  • Cardiology, vascular medicine
  • Neurology
  • Neurosurgery
  • Dermatology, laser surgery
  • Palliative care
  • Obstetrics-gynecology
  • Surgery, pediatric surgery
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Conditions and treatments

Our specialists

No matter what disease or condition you have, Mass General Brigham has specialists near you who can help.
An illustration of a care team.
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617-724-3705

Call the HHT Center at 617-724-3705.

6177243705
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Specialists

HHT Center services and programs

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Services and programs

HHT research

To better understand HHT and offer new treatments, we are involved in many research studies. The Mass General Brigham HHT Center is home to the largest and most active HHT clinical trials program in the United States, hosting trials funded and/or sponsored by the National Institutes of Health, U.S. Department of Defense, and pharmaceutical industry. You may have the opportunity to participate in one of these cutting-edge studies, which offer new and promising therapies to treat bleeding, anemia, and other HHT manifestations. The Mass General Brigham HHT Center is also the home of the Mass General Brigham-Broad Institute Hereditary Hemorrhagic Telangiectasia Biobank, a first of its kind tissue repository composed of voluntary blood and tissue samples from patients with HHT that will be instrumental in advancing our understanding of this serious disease. Your participation in clinical trials and/or the biobank is completely voluntary and your decision regarding enrolling in a study will in no way affect the care you receive from us.

For interest in new medical treatment options in HHT, please schedule an appointment with Hanny Al-Samkari, MD, in hematology, and inform the scheduler you have HHT and would like to be evaluated for a clinical trial of a new treatment. For interest in participation in the Mass General Brigham-Broad Institute HHT Biobank, please schedule an appointment with Hanny Al-Samkari, MD, in hematology or Josanna Rodriguez-Lopez, MD, in pulmonary.
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Contact the Hereditary Hemorrhagic Telangiectasia Center

Call us to speak with a team member who can help you understand your options and guide you to the care that is right for you. With locations throughout New England and support for patients traveling from outside the United States, we make it easier to access coordinated, expert care.
primary
phone
617-724-3705

Call the HHT Center at 617-724-3705.

6177243705
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International Patient Services

Contact information for international patients

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Contact