Hereditary Hemorrhagic Telangiectasia (HHT) Center
The Mass General 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 while working with a person’s primary care provider.
Meet the Team
- Angela E. Lin, MD
- Raymond W. Liu, MD
Vascular Interventional Radiology
- David J. Kuter, MD, DPhil
- Tomi L. Toler, MS, CGC
- Individual and family history, especially nosebleeding
- Focused examination, especially telangiectases
- Review of HHT Clinical Guidelines
- Consideration of DNA-based testing
- Genetic counseling
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 a person’s 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 for the patient and their family.
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 Massachusetts General Hospital, MassGeneral Hospital for Children, and Massachusetts Eye & Ear Infirmary. This collaboration allows us to provide specialized care across the lifespan.
Dr. Angela Lin coordinates care and makes referrals to the appropriate specialists. Patients who are being followed by outside providers have this information integrated into their care plan.
- Medical Genetics, Genetic Counseling
- Radiology: Diagnostic, Vascular Interventional, CT, Neuroradiology
- Cardiology, Vascular Medicine
- Dermatology, laser surgery
- Palliative care
- Surgery, pediatric surgery
HHT affects many parts of the body and affected people can present with various symptoms or conditions.
- Nosebleeds (epistaxis)
- Anemia (iron deficiency)
- Migraine headaches
- Pulmonary hypertension
- Chest pain
- GI bleeding
- Juvenile polyps
- Weight loss
Organizations and websites
The HHT Foundation International, Inc. is the leading disease specific advocacy group for HHT. As their website notes, “HHT is an inherited disease that affects over 1 million people worldwide. It is characterized by defective blood vessels in the brain, lungs, liver, nose, skin, and intestines, and typically begins with nosebleeds during childhood. HHT is highly treatable but can result in serious health problems if not promptly diagnosed and treated.” http://hht.org/
Research articles and opportunities
Refer to the HHT Foundation website tab, “Resources”, for PDFs of scientific articles
“Counting HHT, as Simple as 448.0”. Angela Lin, MD
HHT in GeneReviews, Jamie McDonald and Reed Pyeritz, January 2012.
Many of our individual staff have published scientific articles related to many aspects of HHT. This can be accessed through their Mass General biographies which provide links to PubMed searches.
We provide an extensive number of articles and brochures for patients at the time of their visit.
Hereditary Hemorrhagic Telangiectasia (HHT) CenterYawkey Center for Outpatient Care, Suite 6C
55 Fruit Street
Boston, MA 02114
Public Transportation Access: yes
Disabled Access: yes
Contact MassGeneral Hospital for Children to schedule an appointment with one of our specialists.
We respect that the family is the center of a child’s life and we welcome families to participate in every aspect of their child’s care.
At MassGeneral Hospital for Children, members of the patient’s care team work together to provide coordinated, multidisciplinary treatment.