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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.
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.
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, MDhttp://www.hht.org/docs/2013v2-ICD_Code_448.0.pdf
HHT in GeneReviews, Jamie McDonald and Reed Pyeritz, January 2012.http://www.ncbi.nlm.nih.gov/books/NBK1351/
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) is a genetic disorder that affects blood vessels. This handout will discuss HHT, the causes and signs of HHT, how doctors test for it and how doctors diagnose it.
In addition to practicing clinical genetics at MGHfC, I conduct clinical research in the field of birth defects surveillance. Since 1997, I have been the clinical geneticist consultant to the Massachusetts Department of Public Health Birth Defects Monitoring Program (BDMP).
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