In FY 2026, HRSA awarded funds to Hereditary Hemorrhagic Telangiectasia (HHT) Foundation International, Inc. to strengthen the system of services for people with HHT, their families, and caregivers by establishing a national HHT Center. This center supports comprehensive care and expands access to care, including screening, diagnosis, and treatment to improve health outcomes.
What is HHT?
HHT is a rare genetic disorder. It causes abnormal blood vessel formation on the surface of the skin, lining of the nose and intestinal tract, and in the liver, lungs, and brain. These blood vessels can burst and bleed, causing serious issues like embolic stroke, brain abscess, pulmonary hypertension, and other respiratory complications. Ten percent of patients die from complications. The disorder affects roughly 1 in 5,000 people. HHT can impact anyone, regardless of age, sex, or ethnicity.
HHT can be hard to diagnose. Symptoms like nosebleeds may be mistaken for other conditions. HHT also varies by person. The time from first symptom to diagnosis can be as long as 27 years.
Specialists from many fields care for people with HHT because the disease impacts multiple parts of the body. Outcomes for people with HHT are better when specialists work together as teams.