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NEW YORK – NewYork-Presbyterian/Columbia University Medical Center has been named a Hereditary Hemorrhagic Telangiectasia (HHT) Center of Excellence, the first of its kind in New York. The designation, made by Cure HHT, recognizes institutions that provide outstanding specialized care for HHT, a rare genetic disorder that can cause sudden, catastrophic internal bleeding and stroke.

“We’re incredibly proud to receive this designation from Cure HHT,” said Dr. Sophie Chheang, a vascular and interventional radiologist at NewYork-Presbyterian/Columbia University Medical Center, and an assistant professor of radiology at Columbia University Medical Center. “New Yorkers with HHT deserve a care team that has the extensive knowledge, personnel and facilities to treat this condition.”

In order to receive the Center of Excellence designation, NewYork-Presbyterian/Columbia had to meet criteria established by the Cure HHT Board of Directors. Hospitals must have a multidisciplinary team of specialists – including otolaryngologists, interventional radiologists and genetic counselors, among others -- with advanced knowledge of HHT, as well as facilities that can perform all procedures necessary to evaluate and treat the condition.

HHT affects approximately 1 in 5,000 people and is characterized by abnormal blood vessels and blood flow. In normal blood flow, capillaries connect an artery to a vein, forcing the blood, which is under high pressure in an artery, to slow down. However, in people with HHT, the artery may connect directly to the vein, creating a fragile site that can tear under high pressure, resulting in massive internal bleeding.

These vascular malformations most often occur on the skin or in the nose, but can form anywhere in the body. When they occur in vital organs such as the lungs, brain, liver or digestive tract, they can cause life-threatening complications. Therefore, care teams must screen HHT patients for these high-risk malformations, and may need to perform surgical or medical interventions to stop them.

Due to the nature of the condition, Cure HHT specifies that Centers of Excellence must provide HHT patients with coordinated multidisciplinary care across a wide range of specialties, including cardiology, pulmonology, gastroenterology and hematology. Because of the disorder’s genetic components, Centers of Excellence must also have genetic counselors to help trace HHT through a patient’s family, potentially identifying other family members who might need evaluation.

“HHT is often difficult to diagnose and treat – there are very few facilities in the country that are able to provide the highest level of care for these patients,” said Dr. Chheang. “We are happy to be the first in New York to offer these services to patients.”

For more information, please visit curehht.org. 

NewYork-Presbyterian

NewYork-Presbyterian is one of the nation’s most comprehensive healthcare delivery networks, focused on providing innovative and compassionate care to patients in the New York metropolitan area and throughout the globe. In collaboration with two renowned medical school partners, Weill Cornell Medicine and Columbia University College of Physicians & Surgeons, NewYork-Presbyterian is consistently recognized as a leader in medical education, groundbreaking research and clinical innovation.

NewYork-Presbyterian has four major divisions: NewYork-Presbyterian Hospital is ranked #1 in the New York metropolitan area by U.S. News and World Report and repeatedly named to the magazine’s Honor Roll of best hospitals in the nation; NewYork-Presbyterian Regional Hospital Network is comprised of leading hospitals in and around New York and delivers high-quality care to patients throughout the region; NewYork-Presbyterian Physician Services connects medical experts with patients in their communities; and NewYork-Presbyterian Community and Population Health features the hospital’s ambulatory care network sites and operations, community care initiatives and healthcare quality programs, including NewYork Quality Care, established by NewYork-Presbyterian, Weill Cornell and Columbia.

NewYork-Presbyterian is one of the largest healthcare providers in the U.S. Each year, nearly 29,000 NewYork-Presbyterian professionals deliver exceptional care to more than 2 million patients.

For more information, visit www.nyp.org and find us on Facebook, Twitter and YouTube.

Columbia University Medical Center

Columbia University Medical Center provides international leadership in basic, preclinical, and clinical research; medical and health sciences education; and patient care. The medical center trains future leaders and includes the dedicated work of many physicians, scientists, public health professionals, dentists, and nurses at the College of Physicians and Surgeons, the Mailman School of Public Health, the College of Dental Medicine, the School of Nursing, the biomedical departments of the Graduate School of Arts and Sciences, and allied research centers and institutions. Columbia University Medical Center is home to the largest medical research enterprise in New York City and State and one of the largest faculty medical practices in the Northeast. For more information, visit cumc.columbia.edu or columbiadoctors.org.

Cure HHT

Cure HHT is the only patient advocacy organization in the world dedicated to funding research, educating patients and the medical community, improving access, increasing standards of care, advancing treatments and raising awareness about HHT disease. Hereditary Hemorrhagic Telangiectasia (HHT), also known as Osler-Weber-Rendu Syndrome, is often labeled the silent killer, affecting the lives of more than 1.4 million people worldwide. HHT does not discriminate and most are unaware that "nosebleeds in the family" can be something much more and potentially life-threatening. 90% of the people will go undiagnosed. If diagnosed, HHT is treatable.

For more information go to www.curehht.org on Facebook and Twitter.