Hereditary Hemorrhagic Telangiectasia (HHT) Center

About the Program

The Mass General HHT Center offers diagnosis, genetic counseling, multidisciplinary evaluations, and care coordination for people with this common (1/5000) genetic condition. Our team works with our patients’ primary-care provider to identify specialty care needs to improve outcomes. We strive to create an “HHT medical home” while offering a wide range of specialists, treatments and education our patients.

About this program and our multidisciplinary team

Hereditary Hemorrhagic Telangiectasia (HHT), also known as Osler-Rendu-Weber Syndrome, often results in nosebleeds and other bleeding problems throughout the body. The Mass General HHT Center emphasizes the importance of the first step of making the correct diagnosis. We provide confirmatory genetic testing, genetic counseling, obtain multidisciplinary evaluations, and coordinate specialty care.  Our team works with a patient’s primary-care provider to identify specialty needs, which improve care and outcomes.

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

Dr. Josanna Rodriguez-Lopez, Director of the Mass General HHT Center, and the rest of our team provide standard-setting HHT care for patients through a family centered approach.

Diagnosis of HHT

Diagnosis of HHT includes:

• Individual and family history, especially nosebleeding
• Focused examination, especially telangiectases
• Review of HHT Clinical Guidelines
• Consideration of DNA-based testing
• Genetic counseling

Our Services

• Medical Genetics and Genetic Counseling
• Otolaryngology
• Radiology: Diagnostic, Vascular Interventional, CT, Neuroradiology
• Hematology
• Gastroenterology
• Pulmonology
• Cardiology, Vascular Medicine
• Neurology
• Neurosurgery
• Dermatology, laser surgery
• Palliative care
• Obstetrics-gynecology
• Surgery, pediatric surgery